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.

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.”

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.

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.

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.

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.

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.

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.

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.

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.

End of Summary