The Healthcare System is Letting Us Down: A Much Needed Conversation On Sickle Cell ft. Simply Sayo

Summary

Podcast Summary: "The Healthcare System is Letting Us Down: A Much Needed Conversation On Sickle Cell ft. Simply Sayo"

Podcast Information

• Title: To My Sisters
• Hosts: Courtney Daniella Boateng & Renée Kapuku
• Guest: Shia (Simply Sayo)
• Release Date: July 20, 2025
• Description: "To My Sisters" is a podcast dedicated to exploring the realities of navigating adulthood, sisterhood, and more, promoting holistic wellness, growth, and community development among women globally.

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1. Introduction

The episode kicks off with the hosts, Courtney and Renée, introducing their special guest, Shia, affectionately referred to as Simply Sayo. The primary focus of the conversation is sickle cell disease (SCD), a topic they feel is under-discussed within their community.

Notable Quote:

• [01:54] Courtney: “We are three are your online sisters and host of today's episode of the to my sisters podcast. And we are going to be chatting about sickle cell.”

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2. Shia’s Personal Story and Advocacy Journey

Shia shares her deeply personal connection to sickle cell, stemming from the loss of her sister Elizabeth at the age of nine. This tragedy has profoundly impacted Shia, shaping her commitment to advocacy and raising awareness about SCD.

Notable Quotes:

• [01:04] Shia: “Sickle cell is the fastest growing genetic condition. It didn't really hit that. Oh, like this thing is deadly. I just didn't know if she was going to turn 10.”
• [03:36] Shia: “This is home.”

Shia elaborates on her role as a content creator and comedian, using her platform to educate and destigmatize SCD. Her advocacy is fueled by personal loss and the desire to prevent others from experiencing similar heartbreak.

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3. Impact of Sickle Cell on Individuals and the Community

Shia delves into the multifaceted impact of SCD, highlighting both the physical and emotional toll it takes on individuals and their families. She discusses crisis episodes, which are acute pain episodes caused by the blockage of blood flow due to the misshapen red blood cells characteristic of SCD.

Notable Quotes:

• [32:10] Shia: “Sickle cell is a hereditary or genetic blood condition that is not exclusive to, but predominantly affects and is seen in people of African and Caribbean heritage.”
• [09:00] Shia: “A lot of people who are living with sickle cell, who are living with the condition, they don't speak out about it, as is their prerogative.”

Shia emphasizes the importance of understanding the condition beyond the physical symptoms, addressing the delayed development and the psychological burden it places on individuals, especially children.

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4. Blood Donation and Advocacy Efforts

One of the central themes is the critical need for ethnically matched blood donors. Shia highlights the NHS's requirement for approximately 16,000 new black blood donors due to the rising prevalence of SCD in the UK.

Notable Quotes:

• [06:11] Shia: “There have been record numbers of people from black heritage backgrounds donating blood in recent years.”
• [86:44] Shia: “I am about to start a national campaign around trying to get more blood donors from black heritage backgrounds to register to donate blood.”

Shia discusses her upcoming campaign aimed at mobilizing the black community to donate blood, stressing that even a single donation can save multiple lives. She shares her personal experience as a bone marrow donor for her sister Rebecca, underscoring the profound impact one person's contribution can have.

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5. Systemic Failures in Healthcare

The conversation shifts to systemic issues within the healthcare system, particularly medical racism and its detrimental effects on the black community. Shia recounts historical abuses and ongoing distrust towards medical institutions, which hinder effective screening and treatment for SCD.

Notable Quotes:

• [41:37] Shia: “UCL University College London was literally the college that like legitimized eugenics, like, and, and that was all off the back of forced experimentation on black women.”
• [57:16] Shia: “Medical racism because black women are three times more likely to die from maternal mortality.”

Shia critiques the NHS for its inadequate screening processes, which often require women to be pregnant before receiving necessary genetic information, thereby delaying crucial preventative measures.

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6. Cultural and Social Challenges

Shia and the hosts explore the cultural stigmas and taboos surrounding SCD within the black community. They discuss how societal attitudes and misinformation contribute to the silence and shame associated with the condition, making it difficult for individuals to seek help or disclose their status.

Notable Quotes:

• [40:23] Renee: “We silence a lot, especially when it comes to medical conditions.”
• [62:48] Renee: “I think the thread that is running through this conversation is just how unfortunate it is that sometimes the responsibility is disproportionately the black community to advocate for something that is so dominant within our community.”

The hosts and Shia advocate for open conversations to dispel myths and encourage proactive health management.

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7. Shia’s Campaign and Call to Action

Shia outlines her ambitious plan to launch a national campaign focused on increasing blood donations from black individuals. She aims to leverage her social media presence and community engagement to meet the NHS's goal of 16,000 new donors.

Notable Quotes:

• [86:44] Shia: “I am about to start a national campaign around trying to get more blood donors from black heritage backgrounds to register to donate blood.”
• [89:38] Renee: “It's a really ambitious campaign, but I think we can do it.”

Shia emphasizes the ease and importance of blood donation, encouraging listeners to participate even if they are unsure of their eligibility, as small actions can lead to significant community benefits.

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8. Conclusion and Resources

The episode concludes with a heartfelt call to action from the hosts, urging listeners to educate themselves about SCD, get their blood type tested, and participate in blood donation drives. They provide resources and express support for Shia’s campaign, reinforcing the message of community solidarity and proactive health management.

Notable Quotes:

• [97:35] Courtney: “If you can do it, like, it's quite simple, do it. Find out how you can do it as well.”
• [98:03] Courtney: “Keep the conversation going. Drop us a comment like this video, follow the podcast, just whatever you can do.”

Listeners are encouraged to visit the podcast’s website, subscribe to their mailing list, and engage with Shia’s initiatives to further support the cause.

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Key Takeaways:

• Sickle Cell Disease is a growing genetic condition predominantly affecting people of African and Caribbean heritage.
• Blood Donation is crucial for managing SCD, with a significant shortage of ethnically matched donors.
• Systemic Issues, including medical racism and inadequate screening, exacerbate the challenges faced by individuals with SCD.
• Cultural Stigma and Silence hinder effective advocacy and support within the black community.
• Community Engagement and Advocacy are essential for driving awareness, supporting affected individuals, and prompting systemic healthcare reforms.

Call to Action:

• Get Educated: Learn about SCD and understand its impact.
• Get Tested: Know your blood type and genotype.
• Donate Blood: If eligible, participate in blood donation drives to help those in need.
• Support Advocacy Efforts: Follow and support campaigns aimed at increasing awareness and resources for SCD.

Resources:

• Visit To My Sisters Website for more information and to join the mailing list.
• Follow Shia’s campaign on social media platforms for updates and ways to contribute.

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End of Summary

Transcript

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[Courtney]

We are joined with a sister in the house. We are going to be chatting about sickle cell.

[Shia]

Sickle cell is the fastest growing genetic condition. It didn't really hit that. Oh, like this thing is deadly. I just didn't know if she was going to turn 10. 10. It's not something I've completely healed from. My sister passing has had such a ripple effect on me because now this is. This is my life now.

[Renee]

Hello and welcome to the to my sisters podcast. I'm Renee.

[Courtney]

And I'm Courtney. And we are your online sisters. Oh, wait, hold on.

[Shia]

And I'm Shia.

[Courtney]

Hold up. We haven't had a guest in a minute. This is shout. We are joined with a sister in the house.

[Shia]

Hello, everybody.

[Courtney]

We are three are your online sisters and host of today's episode of the to my sisters podcast. And we are going to be chatting about sickle cell.

[Shia]

Yes.

[Courtney]

Sickle cell. Yes. Because we don't talk about enough in our community. There are still so many myths that a lot of us hold that we might have inherited from our parents that we may just ignorance child. And so we are with the one and the only Shia. What do we even say about you?

[Shia]

Oh, wow. I want to hear what you want to say about me. First of all, I don't want to put words.

[Courtney]

Let me romance you.

[Renee]

Come on. Come on. Small, small. Poet.

[Courtney]

A poet. A content creator. I would actually call you a comedian.

[Shia]

Yes. Do you know what? It took me a while to embrace that title because, like, I've never done stand up, but I'd be talking to my imaginary audience all the time and they love Me child. So I feel like I'll be great at it, you know what I mean? But yes, comedian as well.

[Courtney]

Comedian period and sickle cell awareness advocate. You are so dynamic in the content that you create and the journey you've taken us on since you started content creation online, which you shared all the multi talented gifts that you have, but also your story with sickle cell and your family. And we just want to delve into that, your story, why you think awareness is important and how we as a community of women, but also people who want to start families or people who are supporting people with sickle cell or people who have sickle cell, what we can do as a community to move forward. So thank you so much.

[Shia]

Thank you so much for having me. Honestly, I got my comfortable, I already got my feet out and everything. I love that.

[Courtney]

This is home.

[Shia]

This is home. I think, I think the black community do a really good job at being there for each other. I think I really want to kind of like start with that because there have been record numbers of people from black heritage backgrounds donating blood in recent years. You know, even there is still. The NHS still need about like 16,000 new black blood donors. It's because sickle cell is the fastest growing genetic condition in the uk and so of course there's going to be more demands because more people are being born with the condition. And so that's something that I think conversations as cliches and as over simplistic as it sounds, conversations can go a really, really long way. And I'm speaking from experience because when my sister passed away, it was a condition that I had only kind of heard about, but not really. My parents didn't sit us down and speak to us about what this condition is. And mind you, I was a teenager, I would have understood, you know, but I think what my parents were doing is they saw it as more so their responsibility, you know, they saw it as something that they didn't want to, for lack of a better word, kind of like burden or put, put any sort of extra responsibility beyond, you know, the expected sibling care and you know, empathy and love etc on us. Whilst, you know, I was going through my GCSES at the time, so trying to maneuver grief, like my first actual like experience of like a heartbreak whilst, you know, trying to be like, you know, high achieving academically and stuff, it was really, really difficult. But I think my form of kind of like escapism kind. I channeled myself into my studies even more when my sister passed because that was the only thing That I. I could distract myself with, you know, for is for as long as. As I was able and needed to distract myself with it. And I think that's why I did quite well with my GCSes, because I just, like, I. It was just escapism, you know, I was like, okay, like, I need to channel. I need something to distract myself with. So I think, generally speaking, the black community are very good at showing up for each other. Yeah, obviously, there's so many ways that we can do better. And, you know, like, but what community doesn't?

[Courtney]

You know what I mean?

[Shia]

Like, we don't need to be so harsh on ourselves, you know, like, it's not. The lack of, you know, blood donation and blood donors, etc. Isn't often for lack of desire. There's a lot of technicalities, like, and there's a lot of, you know, requirements that need to be met that disproportionately, almost kind of like, will impact the majority of people who are. Who we need more donations from. You know, for example, like, if you've gone to Nigeria within the last three or six months or so, you're not able to donate.

[Courtney]

Yeah.

[Shia]

How many Nigerians are going to Nigeria? Do you know what I mean? So that's already cutting off so many people who want to donate from donating. You know, there are, you know, if you have low iron. There was one time where I went to donate, I think maybe like. Like a few years ago, Chama iron was so low, they banned me from donating for a year.

[Renee]

I was like, oh, not the. Get your iron becoming that bad. I'm still breathing my blood bottle.

[Shia]

I'll take a cheeky sea moss gummy jar, increase my iron a year, you know, but, like, and especially with, like, with women as well, you need to align your donation within. Yeah, like, within, like, outside of your cycle. And that was my mistake. You know, like, I went to the donation center, hadn't had breakfast, barely had any water, was on my cycle, and I hadn't eaten, you know, like, no. Checking other things. I'm surprised they didn't buy me for any longer, to be honest with you, because I was feeling quite saying, I'm not gonna lie. I'm not gonna tell them that, you know, I mean, no, honestly, you know, but I think just having those conversations in a way that is easily digestible to the person and cater to the person that you're trying to have the conversation with, you know, Like, I know that the conversations that I'll be having when I'm you know, like at events and charity. Charity events and things like that with, you know, a sickle cell specialist or someone who lives with the condition or someone who's advocating for the condition is different to the kind of conversations that I'm going to be having with someone who has never heard of sickle cell or someone who has only heard about it, like, in passing. Because we have this habit of speaking of things relating to health, especially within our community, as this kind of like conspiracy of silence. You know, it's like we kind of know about it, but no one is really going to say it. And so when things like that happen, there is. It creates a culture of silence and shame.

[Courtney]

Yeah.

[Shia]

And a lot of people who are living with sickle cell, who are living with the condition, they don't speak out about it, as is their prerogative. You know, it's. It's not by force if you don't. It's your medical history. At the end of the day, no one is entitled to that information.

[Renee]

Right.

[Shia]

But when you are, when we're talking about advocacy and the importance of getting people to understand this condition so that we can, you know, so people are making more informed decisions when it comes to things like family planning. And, you know, that's not to say that all, you know, everyone has the. The privilege sometimes to even be able to family plan, you know, sometimes, you know, like, I wasn't planning.

[Renee]

Okay.

[Shia]

You know what I mean? But like, you know, so sometimes it's just about have again having those conversations and letting it not be something that is said in hushed tones, like, I don't have sickle cell and I am so. I'm always. I'm always talking about it. I'm not even a carrier and I'm always talking about it. When I'm dating, I'm asking people, what is your. Like, do you know your genotype? Do you know your blood type? You know what I mean? So, like, for me, it's just about putting it into practice, those things, things that are important. Because you, like, for me, who. I'm not even sure if I want children, you know, like, biologically, you know, so, like, if for me it's like, these things really do matter because I've seen what sickle cell can do. Like, I've felt what sickle cell can be, you know, for so. And that's. As someone who is just loving somebody who lives with the condition, that's not even from the perspective of someone living with the condition.

[Courtney]

Yeah. What's so beautiful about what you've Just shared is we can see that passion. And like you said, that passion comes from that first hand experience of loving someone and caring for someone. So could you tell us for those who may not know you or may have just encountered your amazing content online, which brings so many people joy.

[Shia]

I can't lie to you.

[Courtney]

When I first started following you and I just, I discovered you when I had the privilege of you coming up on my feed, I was like, this girl is hilarious. The poetry was flames. And genuinely there was a time where you had everyone in the, on the Internet in a chokehold, like with your poems and just your amazing, like, videos and stuff like that. So for maybe, for people who maybe know you from that realm, can you please tell us, backtrack a bit and tell us a bit about your story and growing up and, and the story of your sister as well.

[Shia]

Okay, so thank you. Covid was such a wild time. Oh my God, sometimes I'll be walking and I was just like, damn, Covid, that was real. Like, that was actually allowed to go outside. That was crazy. So for me, everything kind of started when. When a man and a woman love each other. Kidding. Kidding.

[Renee]

Oh, we going? Okay. We're going far back. Okay.

[Shia]

No. So for me, everything kind of started with my platform, et cetera. During lockdown. Obviously I was already on Instagram beforehand and stuff. You know, like, I was a performance poet beforehand, but then I kind of took a little bit of a hiatus after uni. I was very existent. I was very existential. And so I just kind of like retreated into like the mundane of work, home, Work, home, enjoyment every now and then. But then I was like, no, you know what? Like, I want to get back into performance poetry. Like, I really miss this. Like, this is. I'm a poet. It's what I love doing, right? Oh, lockdown. No, it was crazy. Mind you, I was doing my masters at the time, so I was doing my masters. And it was during my masters, actually that I was like, you know what? No, like, I really want to get back into this because there was a module in my course, Global Media and Communications, that was focused on meme culture. Oh, God. I was hooked.

[Courtney]

Very interesting.

[Shia]

I was hooked because for me, like, being able to convey. Convey so much meaning, so much context in like, in just an image, out of context, image, and maybe like a few words or sometimes no words for me. That's like, that's crazy. So I started learning more about the history of memes, etc. And so I was like, this is so fun. So that's what kind of, like, reignited my. My passion for it. And obviously, the pandemic hit. I was, like, obviously wasn't able to perform in person because everyone was locked up.

[Courtney]

They were not letting us out, you.

[Renee]

Know.

[Shia]

So I thought, okay, cool. Well, like, if I can't perform in person, then let me just do whatever online, you know? Like, I was releasing things online before anyway, so let me just kind of pick that back up. So I was in the middle of writing an assignment, and then it just hit me. I was just like, when will I. Like, I. One thing about me, I will a. Until my throat is. You know, I love to enjoy myself. And obviously, Covid. That was one of the things that Covid, you know, took away from us. One of the. Obviously, like, the more social things, it took away a lot more important things, you know, like, people literally died. And so having to navigate that in a way that was sensitive to, you know, those who unfortunately passed, but in a way that was still kind of, like, helpful in a way to everyone still going through all of this uncertainty was a bit difficult. But then it just kind of. It just came to me. So I started writing this random little poem, jingle thing with my little sister in the background, and she was like, oh, girl. Okay. I was just like, right. So I recorded it quickly, put my phone down, posted it, put my phone down, went back to my assignment. I was like, gosh, I don't want to do this. All of a sudden, my phone is hot. Notifications left, right? And say something. What's going on? Did I post a note? Because, you know, sometimes, like, when, you know, it's like, oh, my God.

[Renee]

It was in the dress. It was in the drafts.

[Shia]

Oh, damn. I said, oh, let me not embarrass my child. And then I saw the poster, and what? I was just like, oh, okay. I mean, like, if you like this, then you're gonna love what it is I got to offer. Because that was just a random off the dome, off the dome kind of, like, thing that I didn't. I didn't even think about, you know? And so that was what kind of, like, encouraged me to kind of. To capture, like, to just live to enjoy the serendipity of things, you know, like, not overthink things and just do things off the cuff and just enjoy it, you know? And so that was kind of how it started. So from. From then, I was just putting out more content and satirizing different events. Some things I may not have. I may not have. I may not. What's the word I may, shouldn't have. What's the grammar? Oh, I shouldn't. Honestly, I. Some things may have, you know, like, could have done without satirizing, but that's something that, you know, like, you learn, you develop, you know, like. Yeah, different. Like, my sense of humor, my ability to compartmentalize is different to how other people can compartmentalize, you know, and so it's just about have being open to, like, the feedback of your audience and the people that you trust and things like that. But. Okay, cool. Like, I know a different way to go about this. I know. Blah, blah, blah. And so that's something that I've just kind of, like, been working on. But, yeah, no, like, it's just. It started from that one random video, and it's just snowballed into the platform that I have now. But even before I had this platform, I was. I've been advocating about sickle cell. I'm talking about blood donation. But when I had my 1500, 2000 followers, I was still, like, so, sickle cell, do you know your blood type? You know, like, I was still very, very much talking about it because it's something that I had, like, I had been dealing with since I was, like, 15. You know, like, since losing my sister, it's constantly being on my mind because obviously, I have another sister, Rebecca, who. Hey, girl. Who is very much like, she has sickle cell as well. And so the bond that I have with her is like, I'm the only one who knows Rebecca for who Rebecca really is, you know, like, having that kind of, like, sisterhood. But, like, I shared a bed with this girl. I backed this girl. I. I almost breastfed this girl. Like, I was like, I. I was like, you are my child. You are like, there is no sister. There's. You're my child. You're my baby. You know, so, like, having her in my. Like, in my care, like, I'm very, very in. I'm very, very attached to her, and she is to me, because that's the. Intentionally how I wanted it to be. I don't want her to feel like, oh, I'm the only one in the family left with sickle cell. I don't want her to feel like it's something that she needs to go through by herself. Of course, I don't know exactly what it feels like, but that does not stop me from empathizing with her, because every time she's in hospital, I'm in hospital. Every time she's. She's crying, I'm crying. Because if I cry, she cries. If she cries, I cry. You know, so, like, just having that connection with her and wanting her, just wanting the best for her and knowing how much she benefits from blood donation, you know, she goes for blood exchanges every three weeks to four weeks. Right. So that's a lot of blood to be going through. And so for me, it doesn't make sense to have a sister who benefits from the generosity and the selflessness of people within our community, because obviously, blood is matched genotypically. It's matched. You know, like, there's more compatibility when blood is matched racially than otherwise. So knowing that my sister benefits from the generosity and the selflessness of, you know, black blood donors, how can I then not be a blood donor myself? How can I not advocate for that as well? Something that I have seen, seen, like, the impact of. And it's not even just people with sickle cell that blood donation benefits. You know, it's pregnant women who have had difficult labors. It's people who have blood cancer, people who have bone cancer. Like, there were so many uses and needs for. For ethnically matched blood that it. It just does not make sense to me to not be a blood donor and to not, you know, like, advocate for it, especially with my context, you.

[Renee]

Know, that's so, so beautiful. And can I just say, it's so beautiful to hear somebody with such a powerful platform advocating for good. If there's one thing that you probably know on the Internet streets, folks that have, you know, rescinded their podcast licenses, folks that have come online to use their platform for very interesting things, it is so refreshing to hear from someone like you who is able to toe the line between OB bringing so much joy to the Internet, but then at the same time, being able to educate us on something that actually is very pertinent to our community.

[Shia]

Yeah.

[Renee]

So, so wonderful to hear you speak so articulately about it as well. Because again, so many of us be on the Internet talking about stuff that we need to do a little bit more research. You know, it's like people be dying.

[Shia]

Out here, talking about going 50, 50 still in 2025.

[Renee]

I hope that we can put that down by 2025. But I wanted to talk a little bit more about your relationship with your sister.

[Shia]

Talk about.

[Renee]

And I think it's really giving me, you know, the term my sister's keeper. Yeah, it's very much giving me. It's very much evoking that. So I would love to know what are some of the biggest learnings and Lessons that you have learned from your sisters.

[Shia]

Oh, my goodness. You know that thing. Yeah. Whereby you guys have siblings, right?

[Courtney]

Yes.

[Shia]

When do younger siblings.

[Courtney]

Yeah.

[Shia]

When did you first realize that your younger siblings was starting to become an adult? Like, starting to become their own person?

[Renee]

Oh, scary.

[Courtney]

When they started going to uni.

[Renee]

Yeah. What's going on here?

[Courtney]

I asked you to get me something.

[Shia]

You're not saying. It's crazy. Like, the. I think I. I first realized that Becky was like, becoming her own person kind of recently. Actually, like, she's 15 now, but I think it more so kind of like was cemented to me that, oh, this girl has her own. Like, she has her own mind. Yeah. She's her own. And it is such a beautiful, beautiful mind. I first realized when, like I said recently when she started her gcse. So I was kind of like in the background when she was revising and she's coming up with, like, she's talking about things that I'm just like, that's adult. Like, what are you. Like, that's grown folk stuff. Like, why do you know about homeostasis? Yeah, why do you know about. Why do you know about this? I'm just like, wait. She's literally like, almost. She's a teenager, of course. And then I was like, oh, because she's still my baby girl. Like, she's still my baby sister, as my brother is still my baby brother. Like, you are. You are a child, you know, but like, obviously, like, realizing that she is becoming her own person and she's, you know, like, forming her own identity and she's trying to explore her sense of self and, you know, like, understand herself as it relates to, you know, not just in like the. The micro of our family, but like in the macro of the world, you know, like understanding herself and her role in, you know, like, in society and, you know, like navigating her identity as a. As a. As an African woman, you know, as like a black woman. Like, it was just so interesting. So, like, in my head, she's still that little buck tooth, no tooth having girl that, like, there was a time where I almost. I called her the hippo. The most hurting, she was the resilience.

[Renee]

That you build at home.

[Shia]

She was so hippo esque. Oh, it was crazy. Like, even with that as well, like, children with sickle cell. People with sickle cell develop later. They have delayed development. So there was a time when, you know, like, she had lost her teeth. None of them were growing back. Oh, none of them were growing back. That is tough yeah, like they just weren't growing back quickly enough. And so I was just like, I was looking at her looking at it. I was just like, like I'm like. And obviously, because I understand things, I was just like, this is definitely a developmental delay because of, you know, like sickle cell and stuff like that. Like, obviously people with sickle cells, especially young girls, they sometimes it's not a surprise if they have delayed puberty, you know. And so like understanding just how. Just how much sickle cell impacts even. Let's take it outside of pain, just develop mentally, you know, like physically the way they. They develop, you know. Like, my sister is very, very tall now and she literally went from like looking up to me to now looking down on me. Like, she is like a whole neck and a head taller than me. Mind you, I'm 5:1, but I identify 6 foot, so don't question it. I'm 5:1, but I identify 6 foot energy. No. Do you know what I mean? Whenever people see me in real life, I'm just like, oh, you are not shorter.

[Courtney]

But it's always the short.

[Shia]

It's always.

[Courtney]

Yeah, it's always the short people that carry.

[Shia]

We actually have to take up space with our some way somehow because it's otherwise people will just be flinging their hair in our faces while we're looking at to them. Which has literally happened to me. A friend of mine literally was brushing her hair and she discarded the hair on you. On me. And then she looked down, she's like, oh, sorry, didn't see you there. Why would I not identify as six when people are throwing. Throwing reborn in my face. Let's be so for real, you know, but like, yeah, like understanding that sickle cell impacts people's lives developmentally, like physically, it's something that I'm like, wow. Like this is not something that we can afford to not talk about. Because if it is costing people their. Like if it's costing people their development and it's slowing down their physical development, that this is something we really need to pay a lot of attention to, you know, like, I was only privy to, you know, like the. A better understanding of the delayed puberty impact of sickle cell. When I think in like one of the more recent blood exchanges that my sister had at the hospital at St. Mary's when I brought it up to the nurse that I said like, like I've noticed that a lot of people with sickle cell have really long legs. And then she was like, oh, yeah, it's because of. I forgot exactly. The medical jargon. But she said that, yeah, it's. People with sickle cell often experience delayed puberty. And so when they finally do reach it, like they'll go through puberty, but it's just a lot slower. It's not that they don't experience it at all, but it's just slower, you know, so when they do experience it, they often get like a growth spurt. That girl shot up like she was so. Her growth spurt was so like every time, because obviously, because I was living outside of the home as well, so every time I was seeing her, every time she was coming to see me.

[Renee]

I was just like a foot again.

[Shia]

No, literally, like, when will you stop growing? You know, but like she's grown into this like beautiful, amazing, intelligent, witty, charismatic, charming, very headstrong, very self aware young woman. And like, it's just an honor to be able to experience that because I didn't get the chance to do so with Elizabeth, with my other sister, you know, so that's something that I still struggle to kind of like come to terms with because not too long ago I was with my. I went to. Around to my neighbor's house and I was just, just in catching up some neighborhood gist and gossip. Oh my gosh, there's so much drama, man here. And we. She. Because her son was in the same year as my sister. So seeing her son there, like, you know, like grown up, having like a mustache and bin everything, I'm just like, like, I wonder what my sister would have looked like, you know, like, I wonder what interests she would have developed. I wonder what could have been, you know, and so it's like having that perpetually like on my mind is something that it's like, it's diff. It's difficult to like, it's difficult to come to terms with because I shared a bed, I shared a bedroom with all three of my sisters. I was like the. I was the one. I shared a bedroom with my, with my oldest sister, with, you know, Elizabeth, with Becky as well. So it's like I'm kind of like the thread that ties all of them to that has that kind of connection with all of them. And so for me, like the relationship that I have with them is a lot more especially because they're my younger sisters as well. You know, I'm very protective over them. So seeing. Realizing that Becky is like growing up and you know, like she, she's expressing more desires and she, she's expressing more things that she wants from life and stuff, you Know, it's like, okay, like, I want to make sure that nothing stops her from getting these things, from achieving this, you know? Like, there is absolutely no way that I am going to live a life better than what she is gonna. Like, I just can't just know. Like, I want her to do everything that I've done and even more, you know, like, I want her to come back and tell me, oh, my God. So I did this, I did that, blah, blah. And I was just like, wow. Like, I wouldn't have even. Like, I didn't even know that was possible. You know what I mean? And so having living with a condition like sickle cell, that can take away so much, that can be so debilitating. Because I know people who have had strokes, who have had limb death, who have been. Who have had, like. Who have become amputees because of the different effects the sickle cell has on the body. Like, it's like, I'm constantly, like, toeing the line between, like, okay, cool, I want her to do this. I want her to be this extroverted person. I want her to do all this. But then at the same time, it's like, oh, her health. I want to make sure that she's not over exhausting herself, which is something she used to do a lot. She used to experience a lot as a child because it's children. Children are going to play. Children gonna. You know, But. But yeah, it's something that I'm always kind of like, I always have in mind.

[Renee]

Yeah.

[Shia]

Because I just don't want her to live a life limited by anything, you know, not. Not the way society treats her because she's a woman. Not the way society treats her because she's African. Not the way society treats her because of, you know, because of her condition. I don't want anything to, like, limit her. And so I just. I just wanted to live. I just wanted to live. I just want her to live. Like, I just want her. I just want to see her alive. That's literally it, you know, so. So, yeah. Wow.

[Courtney]

That is such a beautiful thing. I think the way you described your sister was actually so powerful. And I can imagine for a lot of people who are experiencing sickle cell, it may not feel as empowering, you know, because there are so many things that you may feel like your condition actually inhibits you from doing. And I'm just mindful that some people listening to this may have heard of sickle cell. Like, heard sickle cell, the phrase they might have watched supercell. And that's the first time they heard of sickle cel. What is sickle cell?

[Shia]

Okay.

[Courtney]

And what are some of the ways that it does. You, you were mentioning about the developmental delay and things like that. What are some of the ways it can impact people?

[Shia]

So sickle cell is a hereditary or genetic blood condition that is not exclusive to, but predominantly affects and is seen in people of African and Caribbean heritage. More so within, like West African. Like, more so within West Africans, but just generally around the continent, you, you can find it. And. But again, it's more so within West Africa. West Africa. So it's a condition that affects the shape of healthy haemoglobin of healthy blood cells. So a blood cell is, you know, is, is, is round and has that indent in the middle so to allow, you know, like oxidation and all these other things and for it to be able to move flexibly through the body. So sick. But sickle cell, people who have sickle cell, their blood is shaped like a sickle. So it's jagged, it's not smooth, it's not round. It's. It's like an incomplete blood cell. And so because of this, it causes, it makes blood flow very difficult around the body. So people with sickle cell experience a something called crisis episode. So a sickle cell crisis is when a part of the body is not well. It's not receiving blood properly and is not well oxygenated because obviously blood carries oxygen. So people experience really, really terrible, chronic, often pain. And it can. A crisis can happen at any part of the body where blood is needed. So my sister's case, she had, she used to have crisis episodes, more so in her back, her legs and her head. So she would have terrible, terrible headaches. She would have crisis episodes in the leg where she wouldn't be able to walk and she'd be breathing in pain. She'd have crisis episodes in her back, where obviously your back. It's, you know, like, it's the. Yeah, it's the lumbar system of, of, you know, of your entire body. So when your back hurts, every other part of your body is, is hurting. And there was a time where she was in hospital, like I think one January, like, I think she was in hospital for like the whole month. Just in and out of hospital. She'd have a crisis episode. We'd take her to hospital. She'd, you know, they'd give her like painkillers, etc, she'd feel better. We'd go back home, another crisis, we're back in hospital. And so having that constant and this was the case for like a good few years until we had, we put her on where the doctors put her on different medication. She was on this medication called hydroxycarbo mind. My mom is so funny. The way I remember hydroxycarbamide is because my mom eurozes everything. I'm a Yoruba woman, I'm a Nigerian woman. So my mom, she, because she never remembers it, she always like finds her own ways. So she used to call it hydrocarbomy dilly.

[Renee]

Wow.

[Shia]

What are you talking about? Hydrocarbon daily. It's like I remember the first time she said that I was just like, what's coming home with you? But what? So like having. It's like sickle cell can be a very like daunting thing, you know, and it can get very serious talking about it. But I share these little stories of, you know, like the anecdotes of how my family kind of like add a little bit of humor to it, you know, with my mom's mispronunciations and stuff. Because all that medical jargon can get very overwhelming, especially to a child, you know, like. And so it's just been a matter of trying to scaffold her understanding of her condition over the years in a way that is digestible to her. I remember when she was younger, like trying to explain a medical condition, a hereditary medical condition to a child that all she knows is I'm born with this thing, I'm different, I'm in pain. I don't want to like, why me? Try like constantly having to like navigate that in a way that is, you know, like sensitive and you know, empathetic and doesn't I have a tendency of like words, words, words, words, words, you know, and so it's something that like I constantly have to like, okay, how can I better explain this to her so that she understands what is going on? So it's honestly my relationship with her is being one whereby, like we grow together. You know, like she grows in her understanding, understanding of sickle cell, just as I'm growing in my understanding of sickle cell. You know, there are specialists out there who are dedicating their lives to research and you know, understanding and putting out the information that we need. And so me just trying to like, then funneling it down to explain to a 5 year old, to a 6 year old, a 10 year old, an 11 year old that is just hates the fact that she's born with this condition. And I'm trying to do it, I'm trying to like articulate it to her in a way that doesn't glamorize it. That doesn't make it, you know, like, wow, this is something that. No, this is. This can be a good thing. It's like, okay. Like, I also don't. I'm a realist, you know, but at the same time, I know how to speak to children, you know, so it was really just about figuring out how best to educate her, but in a way that doesn't make it so doom and gloom, you know, and so, like, navigating. That was just about, you know, laughter. And that's why I. Satire is my. Is my cup of tea. Like, I love satire. I love turning something that is otherwise very serious and very, you know, like, doom and gloom into something that is. It's still true to the context, but in a way that is like, okay, like this. Like, this too shall pass kind of thing, you know, like, there's something. There's another way that we can look at this that will, you know, address it for what it is, but not in a way that is like, okay, like, it's not debilitating, you know, so, yeah, I was just trying to, like, navigate that and, you know, like, when I'm talking to young girls and talking to, like, adults, etc, about sickle cell, like, young girls and young boys. Sorry. It's just about having that kind of, like, that flexibility to be able to cater it to other people's understanding, you know, so. Because I know I'm coming from a place of. I know this, I know that, I know this, blah, blah, blah, blah, blah. But again, like, there are some people who have never heard of sickle cell. And so it's very important to have the conversation with your parents. Like, ask your parents if you don't know your blood type type, like mom, dad, or mom or dad or whoever. What is my blood type? Yeah, what's your blood type? Do you know? Like, do I. Is it something I need to, you know, like, is there a history of sickle cell in the family? Is there any family member or relative that had sickle cell that I didn't know of? And so, like, just having those conversations. I think our parents try to do the same, where they try to protect us and try to, you know, like, almost bury their head in the sand sometimes in a way that is, like, wishful. It's like, I don't want to. I don't wish this on my child. And so I'm just gonna ignore reality, Ignore it. You know, it's like, for me, I'm Like I said, I'm a realist. Like, let's talk about what it is we need to talk about. Let's tackle it head on and, like, create a environment where it's the norm to talk about, you know.

[Courtney]

Yeah, absolutely.

[Renee]

No, I really love that. I think a couple of things there in what you were saying. I love what you were talking about. The fact that within a lot of our cultures, especially as, you know, folk, West Africans, Caribbean, etc, whatever, there is a cultural norm of silence.

[Courtney]

Right.

[Renee]

We silence a lot, especially when it comes to medical conditions. I think because of a couple of reasons. One, because of actually the historical distrust in a lot of these medical institutions and a lot of the history that we share being either victims or being folks that have taken the full brunt of a medical system that's actually not fit for purpose, but particularly as black women as well. So that's kind of like one side of the equation in terms of having genuine distrust of medical institutions. But then another side is within our culture, sicknesses from mental health to actual genuine issues that we have, they're completely demonized. And I'd like to think that our generation is obviously, you know, the generation that started to talk about these kind of things. But there's still a little bit of taboo when we're having conversations, whether it be in dating, whether it be, you know, with our friends and our family. So I'd love to hear your thoughts on actually navigating conversations in the contemporary space. So for the ladies that, for example, may be a sickle cell carrier and they're now engaging in dating, or they may not be a carrier, in fact, they may have sickle cell. Like, what does that conversation look like now that, you know, thinking about your sister, you know, girl might be dating soon.

[Shia]

Yeah.

[Renee]

Or thinking of dating in a space where, you know, attitudes are changing, but there is still a culture of taboo. There is still a culture of demonization, how do we now start having these conversations with people? Bluntly, realistically, what are the some. What are some of the things that all of us can think about when we're entering into these conversations as well? Like realistically, but also transparently.

[Shia]

Yeah. I think what you mentioned earlier about the distrust of, you know, the medical field, especially as Black women, is something that is so, like, salient to me because a lot of the medical advances and innovations that we have today that the west love to boast about, like, you know, that's, you know, this crazy thing. It's like a lot of them came off the backs of forced experimentation on black women.

[Renee]

Right.

[Shia]

UCL University College London was literally the college that like legitimized eugenics, like, and, and that was all off the back of forced experimentation on black women. And that's what you'll find historically. There's a book called Medical Apartheid. Yeah, yeah, is this big, big book which, which catalogs the history of forced experimentation on African American bodies from, you know, like a few hundred years ago to current day. It's something that I still, I've, I still haven't started it because I already know so much because I made it my business. Like, I went through this like, you know, when everyone was like pro black. Yeah, yeah. And it felt like, it felt like a, I was angry. Oh, I was so angry because. And it's not even just, you know, black women that are experiencing. This is what happens with, to indigenous cultures. This is what happens to people in, in war torn countries.

[Renee]

Right?

[Shia]

People take advantage of the most vulnerable of the people who are, are least protected. And they do, they quite literally do whatever it is they want. And so the history of, you know, medical racism, which is another thing that part of that takes apart, that plays a significant role in the way sickle cell is, is handled, is something that is 100% valid. It's like having that distrust of the medical industry that has been built off the, the bodies and of the backs of enslaved, you know, like black women and black men and black children. Like, yeah, that's completely understandable. And so when your concerns are coming from a place of that, I completely understand that. And I think that's something that we need to, we need to maneuver around with sensitivity, you know, like, it's completely understandable. You not wanting to donate blood because of terrible experiences within a racist medical institution is completely valid and it's completely fair, you know, and so I don't want to approach the importance of blood donation and sickle cell advocacy from that place of, oh, like, you should do it, you should, you know, I mean, like, it's, yes, you should do it, but like, at the end of the day, it's your body. If you, you're not comfortable, there are other ways that you can advocate that. You can, you know, you can talk about it. Like I said, I don't live with sickle cell myself, but I'm still advocating for it. You know, even in the year that I wasn't able to donate blood, I was still getting other people to donate blood, you know, on my behalf, you know, like. But I think that not having a trust of the, you know, of the process is understandable, but that's why it's so important to talk about it. You know, donating blood is so very easy. You literally walk into a blood donation clinic, you book an appointment. Often you can literally just walk in or call, make an appointment. Prior you answer the health questionnaire. They ask you a bunch of questions. The questions range from travel, your recent sexual experiences and a bunch of medications and stuff, and pre existent medical conditions. You fill that out. Once you're finished, you go, you're taken into a room by a nurse, they prick your index just a little bit, just to get a drop of blood. They put it into, I think maybe like an iodine solution or something that tests the level of iron. Depending on how quickly the drop of blood sinks or sinks to the bottom of the, the cylinder or whatever of the tube determines whether or not you're able to donate blood. It measures your iron levels. But there is, they, they're revisiting the levels of iron that women need and they're lowering it because obviously women are cyclical. We're very cyclical, you know, so we, like, you can't have the same expectation of bodies who are constantly in a cycle of, of, of bleeding, you know, and so they've, they're more considerate of that. So there are things that are happening that there are changes being made to the blood donation process that makes it even easier for people to donate and makes it less likely that people are turned away from donating blood. I think the taboo around and the mysticism around medical conditions and health is something that greatly holds back every community. If you are, if there is something that is rampant almost amongst your community and you're not addressing it from a place of genuine curiosity and genuine intrigue and like, you know, like information, and you're mystifying it and you're demonizing it. Who is that benefiting? Like who? Like who?

[Courtney]

And who is that?

[Shia]

Who is that benefiting? How can you claim to be for the community? How can you be. How can you claim to care about the community? And you're stigmatizing and you're silencing people, often women, about conditions that we are going through. You're silencing the community about a condition that affects so many people. I know. So I hear so many stories of people who have lost children because it wasn't disclosed that they had sickle cell and the rest of the family didn't know. And like, there was a story that a friend of mine shared where I think it was her basically like a Nephew of hers passed away because the mother passed away shortly after the mother passed away because the child was sick, was had sickle cell, but she did not tell the husband. And that's what happens when people internalize the shame that is projected onto a condition as, as common. Because again, it's the, it's the fastest, it's the fastest growing genetic condition in the uk and that is in no small part due to the stigmatization and the demonization of it. You know, this is, it's, it's not a curse, it's not anything, it's not a punishment for anything. And I, I so, so much resent any attitudes around it being something that is, you know, like that is a curse or it's a punishment or is it this or it's. No, it is a very common condition that can be treated with, you know, like, not even just treated, that can be completely like avoided. You know, going to the GP and pressing them about, you know, like finding out your blood type and your genotype is very, very, very important.

[Courtney]

Yeah.

[Shia]

And I know it's not easy. Like obviously the NHS is overwhelmed. Yeah, I used to work in the nhs. Overwhelmed, messy. And when you're contextualizing things like medical racism where, you know, black women are even stepping outside of, of sickle cell for a minute, Black women are three times more likely to die from maternal mortality. Yeah, medical racism because black women's pains just aren't listened to. Now we're talking about children, Black children that are already adultified, like, it's not fair. And so anyone who is speaking from a place of ignorance, from a place of over spiritualizing a condition that is, is like so many people's lived realities and you're, you're silencing a whole community. It's terrible. And you, like, you just, you need to stop. And I think people need to have the discernment to be able to. The discernment to know when to listen to somebody and when not to listen to somebody that you perceive as being more knowledgeable than you always listen to the medical professionals. Always.

[Renee]

Yeah.

[Shia]

And I think people, like, people trivialize expertise too much nowadays because there is so much conjecture. People think just because they have neon lights in the background and you're an expert. No, you cannot be. Do not let the smokes and mirrors twang you into, you know, believing and internalizing something negative about a condition that everyone should, everyone should be talking about.

[Courtney]

Yes.

[Shia]

Because it's so common. I have a question. Do any of you have indirect experience with sickle Cell. Do you have anyone in your family who has sickle cell or what?

[Courtney]

Yeah, so I have friends. I have friends who have sickle cell and I think watching the experience of it, especially when they go into crisis, that's what helped me to take it a lot more seriously. So I think I became friends with somebody who carries sickle cell.

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[Courtney]

2017 and up until that point, I actually hadn't really heard of it. I'd heard of like anemia, but I didn't know about sickle cell. And so to learn more about the condition and then to see how it actually affected someone in real life, I was like, yeah, there's actually something we can do more broadly as a community. But what shocked me was how hard it is to do something about it in the sense that, and I don't know, I think it's changing over time. More people are becoming blood donors and things like that. The information is getting out. But to do something as simple as getting your genotype or understanding your blood group.

[Renee]

Yeah.

[Courtney]

If you are not pregnant or if you are not, you know, a carrier or somebody who's like this sickle cell in my Family. Why is it so hard for me to find out what my blood group is? Why is it so hard for me to find out what my genotype is? And it's like people think just because you gave this information to my parents once when I was A Baby, that 28 years later, when I'm preparing to get married, they will have this information. They don't have that. So now I've got to go and find out by myself. And I don't understand why it's so hard for such an advanced exact medical system in the uk. Why is it so hard for me to understand that information? Especially if you know how damaging it can be, how just how much it can be prevented and how much it's growing as well. Like, if all of these components are very much, much there for you to see, surely there should be just a small arrangement I can make at my GP for them to do what you said, prick my finger and give me this information.

[Shia]

Like what, what has, how has it been for you trying to find out your, your genotype? Like, has it, what has the process been? Because I already know that I'm a. So, yeah, tell us that because it can be very difficult.

[Courtney]

I am having a baby. I am having a baby. I need you to give me this information literally now. And that's the only way.

[Shia]

Yeah.

[Courtney]

Exactly. Why do I have to threaten you with family planning? When I'm trying to plan, I'm actually trying to plan ideally before. Trying to plan before this happens. And I think that's the, another part of the contradiction and the confusion. Why do I have to wait until I am carrying a baby.

[Renee]

Yeah.

[Courtney]

Before you tell me whether this baby is at risk or sickle cell, like surely this is. And then I think they'll prevent, they'll present to you something. Obviously this hasn't been my experience because I have conceived yet, but like hearing from other women, okay, I had to tell them that I was having a baby or I had to wait till I was having a baby to get that information. And then once they found out something, then they present you with the option of termination. Is that not also a very traumatic thing to introduce to somebody? So if this whole thing is preventable, let's just go back a couple months and just say, hey, if you are planning a family, come in, you don't have to construct some wild story around, oh, I'm pregnant already. I'm thinking about it. Just get your blood tested. I think that that's, that would also help a lot more people to feel comfortable. I Think with the idea of blood donation.

[Shia]

Yes.

[Courtney]

Because they don't. They don't have that relationship with this idea of their blood. Like, we go to the doctor for so many things like our physical body and all of that, but if I also knew I can go to Dr. For them to analyze something in my blood.

[Shia]

Yeah.

[Courtney]

I feel like that would help somebody be more comfortable donating it because they understand it more. And it's a lot more normalized. Exactly. It's a lot more demystifying.

[Shia]

You know, like the. It's crazy that, like, sickle cell is literally the, like the fastest growing genetic condition in the UK and people are having to think. Threaten GPs with babies in order to find out their blood. Like, that's terrible.

[Courtney]

As terrible as if it would not cost you more to treat sickle cell, not in a bad way, but, like, it's gonna cost you more than to give somebody a test. It's that simple. So why y' all not putting it in place? Is it because it affects ethnic minorities more?

[Renee]

That's my conspiracy.

[Courtney]

You don't want to legitimize, like, genuine problems for a community. I just think it's so frustrating. It's so much. The more you learn about it, the more you're like, why is this such a systemic problem? Because it's a systemic thing.

[Shia]

Yeah.

[Courtney]

Yeah.

[Shia]

And so, like, it's like. Sorry, before. We're like, trying to imagine how frustrating it is when you're trying to find out that, you know, like trying to find out your blood type.

[Courtney]

Yeah.

[Shia]

And then now imagine it from the perspective of a child that has been born due to, you know, that has been born with this condition. And then finding out that the. When my parents wanted to do. Wanted to find out if, you know, like, this relationship is something that they have to painfully, like, say goodbye to or not. You're finding out that, oh, yeah, the GP was. The doctors weren't really. They didn't really care to, you know, like, to help your parents understand this condition, even outside of the family planning thing. Like, it. Even for you, like, this is important information to know about yourself regardless of whether. Whether or not you want children. Because even people who are. Who are as blood type. So sickle cell is, like I said, it's a genetic condition just for the people who may not know it's a genetic condition. And it is passed on from two as blood type parents. So both of my parents are as. Something they found out later on after having children, etc. They found out that they were as. And so the the possibility and the likability of their children being carriers being as. So as are carriers of the sickle cell trait and SS is full blown sickle cell carrier. So the possibility and the likelihood of them of their children being carriers and having sickle cell full blown is very, very high. And so if this is something that we know can be very, very detrimental, we know it is, it's fast growing and we know that it is preventable with very simple, you know, preliminary like exams and tests. Why is it so hard? Yeah, that's the golden, you know, why is it so hard? Why is it not treated as more of a priority than what it has? You know, like we can't do like screen.

[Courtney]

We need some screening.

[Shia]

You know, like. And when people are coming to try to find out their blood types and why are you making them jump through hoops especially because. And then they'll now come and come and be shouting on, on the black community. Oh, black community don't care. Yeah, we're being systemically failed babes.

[Courtney]

Yeah.

[Shia]

Structurally failed babes.

[Courtney]

Yeah.

[Shia]

And that's why like I always like pre, like start these conversations acknowledging the fact that the black community are really trying, but when there are, there are. The main thing that we can do to help better manage and monitor this condition is out of our hands because it's. At the end of the day we are at the, we are at the mercy of medical professionals when we're constantly being failed. How, like, how, how much is a conversation, like, as important as conversation is an awareness is we need the infrastructure, we need the actual medical change, you know?

[Renee]

Yeah.

[Shia]

So like it's just constantly like having to remind people to put the pressure on their doctors, on their GP and just like you just, you just have to, you have to. It is too important.

[Renee]

Yeah.

[Shia]

And I think like, I know we're going to get on to dating, but even like when I'm going on dates with people, I'm like, what's your blood type? Yeah, I'm not even as. I still want to know if you know your blood type because I need to know how much, much about yourself it is you, you're, you're privy to, you know, like these things matter. And even if, you know, like the, the, the relay, the dating or relationship doesn't, doesn't, you know, like develop into anything more. I at least know that this person now knows their blood type and so they can make better informed decisions when it comes to, you know, like dating and who it is you're dating, you know, like, like all My brothers already had. We. They've already had that conversation. They already know that. Okay, cool. Like, what's your blood type? Do you know? Because they're all as, so it's very important. You can't. You can't. Like, love is not enough. Love is not enough.

[Renee]

Hello.

[Shia]

Let's not. Let's please. Let's please.

[Courtney]

Let's be guided.

[Shia]

Let's be guided.

[Renee]

Let's be so guided. It's too stressful.

[Shia]

Let's be guided.

[Renee]

I think everything that you've been saying is so pertinent because I think for me, my awareness of, I guess, medical conditions and all that kind of stuff was actually facilitated out of my mum's traumatic experiences with the nhs. So it's so, like, yeah, pertinent that you were speaking about, like, maternal conditions etc, because my mom had the most terrible experience when she was carrying my younger sisters to the point where this whole idea of, like, not believing black women when they're in pain, when they're going through all of sorts of conditions, etc, so my younger sisters are twins. And when my mom was carrying my younger sisters, she was in a lot of pain. She was just like, it was a hell of a pregnancy to the point where they actually thought that she was dead and, you know, they carried her off to mortuary, everything, but she was actually still alive. And it was only when they did. It's so traumatic. It was only when they did the. The checks afterwards, like, oh, you know, preparing the body, all that kind of stuff, they realized this lady was still breathing.

[Shia]

Yeah. Yes.

[Renee]

It's insane when I say a wild and wicked story. And it was because of that experience, my mom has been very, like, probably more so than most. She's been very like, you need to know everything about your body. Like, when it comes to, you know, going to the doctor, she has these, like, little red books that she still keeps. You know, them little reds, them red books and whatnot that she'll keep in, like, suitcases on top of the wardrobe and stuff like that, just in case of anything. She was like, you need to know from birth till, like, now.

[Shia]

Yeah.

[Renee]

This is how much you weighed. These are the genetic conditions that you had. Obviously, a lot of screenings for different things were not available at that time. So we're still finding out information about ourselves that we didn't know, whether it's, you know, whether you're anemic, whether it is you have, like, blood conditions and all that kind of stuff. So for me, pretty early on, I was very aware of, okay, medical conditions. Screenings, that kind of stuff. But it was only, you know, entering into like dating conversations with friends, realizing that, ah, okay, this is actually information that not everybody is privy to. And it's a shame that this is information I'm privy to only as a result of close proximity to a traumatic incident. And I think that really is the big issue within the black community that we only become aware of a lot of issues that are facing our community through trauma. Whether it is maternal trauma, whether it is trauma that we have experienced at the hands of medical professionals through genetic concerns. The fact, you know, even the fact that we have to beg to be screened for certain things, even when we think about other. We've, we've had discussions on this podcast about a whole host of, you know, birth related conditions that women have, reproductive system related conditions, going with friends and having to beg doctors. Can you give a screening for things like fibroids which disproportionately affect black women? Yeah, I think the thread that is running through this conversation is just how unfortunate it is that sometimes the responsibility is disproportionately the black community to advocate for something that is so dominant within our community. And yes, I understand that Obviously within the UK we're a small population, so like 3 to 4% of the population. I think we see that with a lot of other oppressed groups whereby our realities and the things that affect us do not become important until we make enough noise about it. And I think being not just black but also a woman as well, it even adds, you know, fire to the flames that are already happening. Because as women, we're treated very differently when it comes to, you know, medical norms and professions. Our body, our bodies are fundamentally understudied.

[Shia]

Within the medical profession and apparently always up for debate.

[Renee]

Always up for debate. We're literally treated like mini men in a lot of our clinical trials and a lot of the, just the established norms that we have about the human body to now add, oh, I'm an ethnic minority, oh, it's given double jeopardy. It's given. I have to, to constantly rationalize that I'm in pain. I have to constantly rationalize that these are issues that I am facing. I have to constantly rationalize whether I believe my body of the pain that I'm experiencing. And I think that is such a shame that it's not just something that is existing on the outside, but it's now something that, as you mentioned, we're starting to internalize. So it's the. I don't really want to address this issue. Because I don't want to believe that it's real. It's the. I don't want to have the conversation when, you know, dating and stuff because it's. It's quite awkward. And I don't want to be the person that's stigmatized within such a small subset community that we're in already in the dating field. And let's not be ignorant of the fact that Dayton is actually in hell right now. So to now want to say. Oh, like to add another. Yeah, you know, I'm trying to.

[Shia]

It's a. It's.

[Renee]

It's another thing to think about. Another thing to worry about.

[Shia]

Yeah.

[Renee]

On top of this guy saying, you know, are you going 50, 50 on dates now? I have to worry about whether, you know, our offspring, whether there's a fighting chance. And it's like to have these conversations side by side is genuinely depressing.

[Shia]

It's exhausting.

[Renee]

Depressing.

[Shia]

It's exhausting. And I think that's why it's so important to contextualize the failures of the system. Because it is not for lack of. Of care. It's not because black people are. Are ignorant of this and black people don't care. No, babe, this racism, it's medical racism, babes. If no one will say, I will say it's medical racism because there's no. It does not make sense. No other condition that is this common gets as. Gets so little.

[Renee]

Yeah.

[Shia]

Intervention gets so little, like, space to.

[Courtney]

To.

[Shia]

To improve, you know, like to give people a fighting chance. Like, some people, like some parents don't even know that they. That they are as until they've had the children. And then the children are.

[Courtney]

Are.

[Shia]

Are living with this condition that they had no idea about, you know, and so it's like, it's not. It's not just an irresponsibility thing. It's not for laps, lack of, you know, desire or care.

[Courtney]

Yeah.

[Shia]

People just don't know. And so for the people that don't know, because how else do you know unless someone is talking to you about it and someone is bringing it up to you? And so that's why I just. I've been talking about sickle cell so casually. I'm just like, oh, yeah, no, I donate blood. You donate blood?

[Renee]

Yeah.

[Shia]

No, no, I'm a sickle cell advocate.

[Renee]

Yeah.

[Shia]

Sickle cell. Well, sickle cell is the. And I'm just there just talking to everyone because it's just important, I think, you know, like, I don't want anyone to go through what I experienced with My sister. It was preventable. It was preventable. You know, like her death was so preventable and it was down to medical negligence in, in part because we took her to the GP when she was maybe like a day or so before she passed and they didn't do anything. They didn't even do any tests. Tests. Wow. They didn't do any tests. Knowing that this child has a pre existing genetic condition. You don't even think to do a blood test. You don't even, you don't like. And that is just this, that's the state of the nhs. That is the state of, of medical racism. And when, and I think also like when our parents, they're, they're still learning these systems and these ways of being as well. And I think when they have. Because they often do it comparatively to, you know, like their countries or origin.

[Renee]

Yeah.

[Shia]

Like comparing the healthcare in, you know, general healthcare in Nigeria to the uk, you feel like, wow, like at least I'm able, it might take a while but at least I'm able to get an appointment and you know, I'm not having to pay out of pocket for it and blah, blah. So they feel like I'm, I'm even. They're even more trusting of the system that continues to fold them because, because they're comparing it to a system that doesn't even care to hide that. It doesn't. It's literally like die. You know. So I think when it's just about having those conversations and it's, it's annoying that so much of the responsibility comes down to the community to advocate for ourselves and especially in a time where community is not as easy to, to nurture and to find.

[Renee]

Absolutely.

[Shia]

We live in this late stage capitalist system where like the role of the community is, is dwindling more and more because the community. Oh, the community are tired.

[Courtney]

Yeah.

[Shia]

Everybody is tired. We're all tired.

[Courtney]

Yeah.

[Shia]

Everyone is tired. People are struggling. People are struggling with two, three jobs and they still can't make exactly the bill. They still can't make ends meet. There is a fundamental problem with the system.

[Courtney]

Yeah.

[Shia]

And I think it's very important to highlight that so that people don't falsely think that they are the only ones responsible.

[Renee]

Yeah.

[Shia]

It's very, very important. It's like similar to when people are talking about poverty.

[Courtney]

Yeah.

[Shia]

You know, and you know, like you cannot plan or budget your way out of systems. What are we not understanding? Financial literacy. What's financial literacy going to do for someone that's broke? Someone that is literally impoverished yeah.

[Courtney]

And existing in a.

[Shia]

What? You know how expensive it is to be poor?

[Courtney]

Exactly.

[Shia]

It is.

[Courtney]

Exactly.

[Shia]

It is expensive to be impoverished.

[Courtney]

Yeah.

[Shia]

That's the system we're up against. And now we're introducing medical. Medical conditions into it. And then on top of that, we have the layer of medical racism. And on top of that, we have cultural and social attitudes towards. And then we have taboo, and then we have conspiracy of science. Oh, come on, man. It's a lot.

[Renee]

It's too much.

[Shia]

It's a lot. It's way too much. You know what I mean? And so I think it's just about like, highlighting what it is we're able to highlight. Advocate in the ways that we're able to advocate. Whether that's sharing information and whether that's speaking on your own experiences with, you know, like with. With sickle cell or trying to find out your blood type or trying to do family planning. Just speaking. And so much social change happens when the most marginalized and the most neglected of a society are listened to because it benefits everybody. 100, even, like free school meals. That was the Black Panthers. The Black Panthers were the ones that conceived of feeding children.

[Renee]

Imagine what a revolutionary concept.

[Shia]

And they're called revolutionaries because they feed kids.

[Renee]

Kids feeding.

[Shia]

That was. That was a social movement that the Black Panthers started. Obviously, the Black Panthers have their own misogynoirists. Their own sex. Yeah, you know, we're not gonna gloss over that, you know, but they were the organizations that started this. It was adopted by the American government and it became a thing.

[Courtney]

Standard.

[Shia]

Standard. People benefit. But when you have a society that is un. Empathetic. Damn it, apathetic towards the struggles and the needs of a marginalized group of people simply because you're. You've been, you know, you've internalized such negative confirmation biases against them. You don't know you're shooting yourself in the foot. You don't know you're shooting yourself in the foot. If something as common as sickle cell is afforded to be able to slip through the cracks of medical screening and proper medical intervention and attention, what do you think that is going to. That means for so many other conditions as well?

[Renee]

Yeah.

[Shia]

And that's what we are facing. The precedence has been set. When you are constantly neglecting a marginalized group of people, the most marginalized group of people, when you've set the precedence that their life doesn't matter, their health isn't a concern, their development is none of your business, what do you think that is? Like you are setting a Precedence. And so if you're allowing that to happen to this group of people, it's going. They're now understanding that, okay, so it's not the act, it's the people that we're doing it. And so that's how you're now getting all these different marginalized groups having their rights stripped away, because they. You've already set the precedents with.

[Courtney]

Yeah.

[Shia]

With. With black folk. Yeah. You've already set the precedents.

[Courtney]

Yeah.

[Shia]

And so they're taking away more and more people's. People's. People's rights, people's career, because they know that they can get away with it.

[Courtney]

Yeah.

[Shia]

And it's terrible. And so that's why, like, it's unfortunate again, that we having to do so much when we shouldn't. We should. We should be able. Yeah, we should be able to focus on just living and just enjoying life. Like, we shouldn't have to worry about, like, it's a shame that so many connections are, like, will not be, you know, like, will not be able to be extreme. Explored because of, you know, all these things that we have to consider. But for me, it is something that is. I'm always going to put the kids first. Like, I'm always going to put the health of my community first. You know, like, that's something that I care about, and there's so many other things that I care about, but I'm only one person. We're only one person, you know, Like. And so for me, it's like, well, I'm going to choose to really fight for something that I care about that has affected me. And I'm gonna do what I can to make sure that, you know, like, people are listening and people aren't being impacted the same way I am. Because, like, there was. I used to have panic attacks because of the thought of my sister, of Rebecca not making it to 10 because my sister Elizabeth died at 9. And so I would have literal panic attacks. Like. Like, the few months. I'm getting so emotional, like, the few months leading up to Becky's, like, 10th birthday, I was like, I was a mess. I was a wreck because I just didn't know if she was gonna turn 10. 10. Because I like the trauma of just randomly losing my sister when she was nine. I. It's not something I've completely healed from.

[Courtney]

Yeah.

[Shia]

And it's something that I will never heal from because how do you reconcile with losing someone so close to you in such a. On a. On a random day.

[Renee]

Yeah.

[Shia]

How do you reconcile that, you know, and then like growing up and learning that this isn't, it's not a unique story. My story is not unique. There are so many people who have, who have lost their, their siblings, lost their parents off their, their loved ones because, because of, because of this condition that is being stigmatized, that is being over spiritualized, that is being made into like such a taboo when it's like, no, this is, this is people's lives. This has such a knock on effect. My sister passing has had such a ripple effect on me because now this is, this is my life now. Do you know what I mean? And like, in dedicating myself to that and creating a purpose around, you know, like advocacy and things like that, more people in my community are donating blood. And so like, that is just for me, it's like her life is so significant and so impactful and so important that it's not just what, it's not just that we lost one life, you know, like we, like. I wouldn't be able to tell you how much, I wouldn't be able to articulate how much her one life has meant to me. And so my way of trying to get people to understand that that is by advocating about this, like, she meant so much to me that the thought of not talking about something that took her from me just does not make any sense to me. Like, I need people to understand and to feel just how important this girl was to me. And so for me, like, advocacy is a way to keep her memory alive. Obviously, it's a way to honor her. But also it's like, it's the right thing to do, you know, like, it's just, it's just the right thing to do. When she passed, I literally was like, she passed away with 2% blood left in her body. Wow. That's not enough for anything. Of course she was gonna die. How did she get to 2% blood? And she went to the GP a few days, like, how did that happen? And then, you know, like finding out all these things around her death, you know, like, like later on, I'm just like, huh? What? Like. And so to me, it's like, had I have had more information, had my, you know, had my parents had spoken more openly about it and given us more information, Obviously they had their own things that, that like it's, it's a lot. And they themselves didn't know just how serious it was. You know, like, we knew that it was serious up to the point of crisis episode to her being in hospital, but it didn't really Hit that. Oh, like, this thing is deadly.

[Renee]

Yeah.

[Shia]

Until she passed away. And so learning all these things, you know, surrounding her death is like, had I have known, I would have caught the ambulance. I would have, you know, like, I would have. I would have done more, you know, and so it's. It's. That. It's not necessarily guilt because I know that obviously, like, I was a child, I didn't, you know, like, I didn't know any more than my parents had told me, you know, because they were the ones who were dealing with the condition with her. And, you know, we obviously knew to make sure that, you know, we. She was hydrated and she was eating and, you know, to monitor her. But it. The severity and the gravity of the condition was not fully understood. And so now with my advocacy, that's literally just what it is. I'm trying to, like, get people to understand this is deadly. Like, is so important to talk about it. And before it gets to the point whereby it's deadly, like, I don't want. I don't. I want to get to a point where sickle cell is no longer deadly. It's not deadly because the right medical intervention is, you know, is being offered freely and. And appropriately before it's even. It even gets to that point. And, you know, if it does get to that point, when it does get to that point, no problem. It's not a deadly thing. Why? Because we have all these different measures in place to. To. To address it. Bone marrow transplant. A lot of people don't know about bone marrow transplants and how effective it is in essentially curing sickle cell.

[Courtney]

Wow.

[Shia]

Yeah. Like, me and my. I did a match with. I matched with my sister Rebecca. So I'm going to be her bone marrow donor.

[Courtney]

Yeah.

[Shia]

So everyone in the family got tested. This is something that she's been wanting to do for. For, you know, a while. And it was a option that was presented because her case was. She was in hospital quite a lot.

[Renee]

Yeah.

[Shia]

So. And it's only done for, you know, like, really serious cases often, but most in. Most of the time. But finding out about bone marrow transplant and getting the test and it being that, you know, I was the one who matched. Matched with my sister, I was just like, well, yeah, of course. That's my. That's my girl. Like, that's my daughter. Like, literally, like, who else would be her match? Like, please. You know, so, like, knowing that me and her have another level of connection is like, okay, cool. Like, I'm able to. I wasn't able to help my other sister, but I'm able to help her. And not only am I able to help her, I'm also able to help so many other people, like, start having the conversations and give them the, the information.

[Courtney]

Yeah.

[Shia]

That they need to understand the condition for themselves and, you know, just like, encourage people to have the conversation and to just like, not see it as something that is, you know, that you need to be quiet about or something that is like, oh, it's, it's personal. It's, you know, like it's, it's taboo. Sorry. You know, because of course it is personal. It always will be personal. Personal. But from. We, we create meaning in community and in sharing and in being able to relate to each other, you know.

[Courtney]

Yeah.

[Shia]

So me being, you know, open and vulnerable about my trauma, my loss and my grief. My grief, etc, it has done a lot for a lot of people. And so like, okay, cool, well, if I'm going to be feeling this grief anyways, I might as well, you know, like channeling it into advocacy and do something that will make real, like, measurable, you know, change. Change, you know. So, yeah, like it's, it's just very important to me, you know, well done, well done.

[Courtney]

And thank you so much for sharing so vulnerably as well, because these are stories that we don't hear but can change so much for our community. And I think the, the beautiful thing about what you do is you help people to realize that, like you said, this is not something that we should stigmatize in our communities. This doesn't need to have all these smokes and mirrors around it. Honestly. This is something that we should be talking about way more often. And whilst there is personal agency, there is a need for us to kind of ring that alarm for institutions to get involved. And you've been so consistent with your advocacy and your sister's life, life, her story is changing so much through you. So well done. And keep it up. Because like Renee was saying earlier, it's not easy to be a light on social media. It's not even easy sometimes to be the hopeful one or the advocate or that person in your family, let alone in the public square. So well done for being so, so consistent with your message. Right. And so power powerful with it as well. And yeah, we're, we're behind the cause in terms of like raising awareness, but also really prompting every single person listening to this to do a few things, like if you can get tested in any way. Listen, child, concoct your story now, honestly, just be Putting something together right now to take to your gp, but also if you can find kind of like a blood drive or anything near you, go and give blood. And Shia, would be amazing for you to tell us kind of some of the work that you've been doing with different organizations alongside the nhs, but different organizations to help further this cause just so that as a community we can tap in as well.

[Renee]

Yeah.

[Shia]

So I am like the most pressing thing right now is I am about to start a, like a national campaign. Oh God, you're so big. But national campaign around trying to get more blood donors from black heritage backgrounds to register to donate blood. Even if it's just a one time thing, that one donation can save up to three adult lives or six children, like young lives. I think that's incredible and I just don't see, I just don't see it as something that is, you know, so daunting, you know, for people who are, who have been, who are already considering donating blood and are able to donate blood and want to donate blood. I don't consider it as something that is like, that needs to, doesn't need all of this, you know what I mean? Like, oh yeah, there was one time my parking, I had maybe what, like 30 minutes left on my parking. I want to donate a blood.

[Courtney]

Yeah.

[Shia]

I was like, might as well donate blood, you know what I mean? So I went and donated blood. But I'm going to be launching a national campaign to try to get more black donors, black blood donors. So currently the NHS need, when I first conceived of this, the NHS needed like around like 12, 000 new blood donors from black heritage backgrounds. Now it's like 16,000 again because it's the fastest growing genetic condition in the uk and even though, you know, the communities are doing great and you know, showing up, it's, it's, there's more that is, that is needed, you know, like it's, it's an ongoing thing. So I'm going to be going around the country, you know, doing like interviews and just kind of like sharing my story and advocating for the importance of blood donation. I've got like interviews lined up already, you know, like radio and stuff like that. So I'm just looking to make as much noise as possible and just get the message across because I have a very well engaged community that really do care about me and the things that I care about, which is love you guys, but just because I think this is the kind of noise that needs to be made regarding this, you know, like the fact that there are now 16, 000 new donors from black heritage backgrounds that are needed is crazy. Especially, you know, considering we're like 3% of the population.

[Renee]

Like, it's.

[Shia]

It's crazy, you know, but I just want. Even if we don't reach the 16, 000 goal, even if it's just like 10.

[Courtney]

Yeah.

[Shia]

That's still new. That's still 10 new. But obviously we are high achievers.

[Courtney]

We are.

[Shia]

We're gonna get it. Come on. Yeah.

[Renee]

Period.

[Shia]

So, yeah, I'm just gonna be going around the country interviewing and just kind of like, talking about the importance of blood donation and just kind of like raise. Just having the conversation, you know.

[Courtney]

Yeah.

[Shia]

As well as obviously still doing the work that I do with the NHS and other charities, like aclt, etc, and just kind of like, just create that. That communal energy and that communal, like. Like mobilization to get people into, like, the blood donation clinics. There's a gorgeous new clinic that opened in Brixton, Nice, recently, and I've been there. I'm yet to donate there because I had already donated before going there. So I. You know, with blood donation for women, it's every three months. So the minute. The next, you know, my three months is up, I'm back donating again, you know, so I'm gonna be working on that campaign. I want to be doing, like, interviews, you know, like tv, whatever. It is just kind of getting people to talk about it outside of, you know, any. Just. Just because, you know, like, it doesn't need to be tied to. You're talking about supercell and how amazing that was, you know, about creating conversation around sickle cell. And it was. It was amazing. And I just want us to continue the work outside. Like, we don't need to tie it to anything, right. Other than the fact that it's needed. You know, it's necessary, you know, I mean. Yeah, so it's a really ambitious campaign, but I think we can do it. I think. I think we can get 16,000 new black heritage donors. I think it's very possible. Possible, you know, like. And I just think it's something that. Especially in times like this where, you know, there's so much that is uncertain, you know, we're. We're literally in a recession.

[Courtney]

Say it again.

[Renee]

You know, potentially on the brink of war.

[Shia]

You know what I mean? But I think the thing that will always bring people together is community.

[Renee]

Yeah.

[Shia]

And having that kind of like, having that. That call for community, I think that will be really, really mobilizing for people. And, you know, If I can use my platform, etc, as, you know, like, continue to use it as like, you know, a form of, as one catalyst for change. And I'm gonna do that, you know, so I'm working on that and just, yeah, just kind of like working with other charities and just, I just care, you know what I mean? Like, that's honestly just it. Like I don't want to. When I say that I care about something or someone, like, it's like I will quite literally give my blood because I, like, I care so much. I'm literally like giving my blood to my community every three months, you know, And I just want people to just, to just get into that habit of understanding that blood donation, it's nothing scary. Like, I think my last donation, I had my headphones in. By the time I had even decided the playlist I wanted to listen to, the donation was done. It's very quick. Quick, it's very easy. You get a little treat at the end of it. You know, they want the nurses monitor you for maybe like five or ten minutes afterwards just to make sure that, you know, like you're not light headed, you're not feeling dizzy or anything because you're, you know, getting a lot of blood removed, but you'll make it back. Like, it's not something that is. Like it is an endless generating. Yeah. Like it's very regenerating. And so for me, it's like if my body's already going to make it back, what is given, someone who's going to need it, you know, like it's going to save the life of a pregnant woman who's just had a difficult label. It's going to help the life of someone who, of a child battling with blood, you know, cancer, leukemia, or just whatever it is, it is needed, you know. So yeah, and every time you donate blood, you get this like little text saying, oh, thank you for your donation. Your donation has been used at whatever hospital. Do you know what I mean? It's just like, okay, cool. Like I know that, like you can, you can track it, you can trace it. Like, yeah, like my blood has been used to help someone in a random hospital. You don't know what their story is, but people already go through so much and I think that something like this helping remind people that a community, like there is community, people will come to help if you ask for it. You know, I think that's, it's just important to highlight that and really emphasize the importance, sense of community, especially during these times. Like it's, we need to rely on each other. We need to, like, lean in on each other a lot more, you know, in order to, you know, benefit from community. You need to give to community as well. So, you know, so, yeah, like, I'm working on that campaign, so I'm going to be all around, you know, like different radio stations and stuff. So, like, I just want to be like, I just. I'm trying to get as many. Honestly, like, I just. It's just like. Like, it's crazy. 16,000 new blood donors. Like, there are people who will need a blood exchange or blood transfusion. People living with Silkle Cell and they can't have it because there's not enough blood.

[Courtney]

Yeah, yeah.

[Shia]

Isn't that, like, it's serious? People have died because they have been turned away because there's not enough blood. And one person donating could have prevented. Did that.

[Courtney]

Yeah. Well, we believe that you'll do it 16,000 even more. And literally, we are imploring every single person watching this. If you can do it, like, it's quite simple, do it. Find out how you can do it as well. And if you're not in the. Because I think with things like this, when you give like a call to action like that, people may find out, oh, I'm not eligible. You might not be eligible right now, but you might be in a year or so. So keep this in your mind as well as something that you might be working on towards because it's something our community needs. And I really love that you emphasize that at this time in particular, we need community more than ever. Yes. And, yeah, we're behind you as you go on this tour. We really do pray for you that your message will only be amplified and that you will only exceed the goals that you have set as well. And just may all the right people and right organizations align with you and may your team change actually affect systems as well. Because it's one thing for us to have our conversations in our community, it's another for systems like the NHS and infrastructures and institutions to actually be changed. And your voice carries so much power that it will do that. It will change those spaces. So thank you so much for coming on the podcast and sharing. This has been such a good and necessary episode and hopefully we can have you back. Maybe you can tell us all about.

[Shia]

I'd love to have you guys on my show as well. Like, we will be there in a the back.

[Courtney]

Hold on a minute.

[Shia]

Tell them. Tell them exclusive. Yeah, it's called SH says right. I love alliteration. I'M not going to lie. And I love the ass of it as well. So it's called sh says. And it's basically just, you know, like having conversations about different things, you know, like about life, you know, boundaries and love, dating taboos and stuff. I'm very. I'm very much an open book.

[Renee]

Yeah. Yeah.

[Shia]

And I think that is what, like, that's what I gravitate towards as well. Like, I love having conversations with people and not feeling like it's, oh, I can't talk about this.

[Courtney]

Yeah, yeah.

[Shia]

You know, like, society is not in our conversation. We're just having a conversation.

[Courtney]

You know what I mean?

[Shia]

So, yeah, like, it's gonna be really, really fun. Charles says, still waiting for, you know, like, to finalize the date, but it's coming out soon. I wrote a jingle. I love jingles.

[Courtney]

Oh, it's a production already.

[Renee]

We trust you.

[Courtney]

Yeah. Whenever you're ready, we will be there. We'll be there 100% genuinely. Keep doing what you are doing. I will, honestly.

[Shia]

Wow.

[Courtney]

What an episode.

[Renee]

Ladies, ladies, we must see us all. It is 34 degrees over at the Two Sisters HQ.

[Courtney]

But it was worth it.

[Renee]

Yeah, we are so worth it. Impacted, sweaty, lowkey dying.

[Shia]

Damp.

[Renee]

Damp.

[Courtney]

Damn, damn.

[Renee]

We are damp. But we are so.

[Shia]

I was knowledgeable, fighting back, reaching from the.

[Renee]

Yeah, that's the real.

[Shia]

Ladies.

[Renee]

There's at least four different types of lighting that are beaming on us in this hot weather with the window that is closed. I know the production team is in the back like y' all, mind you.

[Shia]

They'Re wearing all black.

[Renee]

Have to resuscitate us. But we have hope this conversation resuscitated you.

[Courtney]

Yeah, honestly, we hope that this has been a real blessing in your life. We know so many people are going to be listening to this conversation from different vantage points and perspectives as well. Whether you are somebody with sickle cell, whether you are impacted by sickle cell as shyo story like people in your family, someone in your family, a friend or maybe you, you don't have any, like immediate contact with it, but you're really curious. I love that word that you Curiosity. We are going to leave some resources down below to help you get educated, more aware and also support no matter what perspective you are coming from. So open up the YouTube description. We'll also leave some information for you to get connected to the wonderful shire. Honestly, a beam of joy and girl, you are hot with the capital T. Do you want to see some black beauty or if you want to see some black beauty on your phone, on your mobile device, you need to follow this thing. So we're gonna leave all of her information down below and honestly keep the conversation going. Drop us a comment like this video, follow the podcast, just whatever you can do. And yeah, we know that you're a very supportive bunch as well. So anything you can do to support, please keep doing it. Follow us on all places on social media o my sisterhood. And you can sign up to our mailing list on the to my sisters website, which is to my sisters dot com. And I'm sure in our mailing list we can actually direct people to support you in different ways as well in terms of the campaign that you are doing. So we will put that in there and you can get tapped in. But until then, sisters, we love you. We want you to stay healthy, we want you to stay well. And so we bid you adieu. Okay, as always, keep glowing and growing.

[Shia]

Love you. Bye, sister. Bye. This is not a drill. You can get the new iPhone 16e with Apple Intelligence for just 49.99 when you switch to Boost Mobile.

[Dorina]

Wait, that's the actual fire alarm. We we need to go visit your nearest Boost Mobile store for full offer details. Apple Intelligence requires iOS 18.1 or later. Restrictions apply.