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A
I'm john strum and this is real talk, mississippi. It's July 21st and we have a lot to talk about. If you've spent any time at all living with or caring for someone with multiple sclerosis, you know that medical textbooks and information filled websites can only tell you so much. They give us facts, they give us figures and symptoms, but they rarely capture the sometimes messy, sometimes overwhelming, and sometimes darkly funny reality of what it actually feels like to get a diagnosis of Ms. And realize your life has suddenly shifted under your feet. My guest this week is Liat Shalom, an award winning graphic novelist who was diagnosed with Ms. At the age of 30 in 2021. Instead of letting that diagnosis define her, Liotte picked up her pen and created Unraveled, a groundbreaking graphic memoir that refuses to sugarcoat the Ms. Experience. Whether you're newly diagnosed or you've been navigating this journey for decades, I think you're going to find Liotte's perspective on using art to process trauma while finding a little humor along the incredibly refreshing. We're going to talk about the graphic medicine movement, how to advocate for yourself when the medical jargon feels like a foreign language, and why she believes we need more honesty and less inspiration Porn in the Ms. Community but before we get to my conversation with Liat Shalom, there are a few other things that you should know About. Five years ago, evidence in a landmark study confirmed that the Epstein Barr Virus, or ebv, was a trigger for ms, not the cause, but a necessary factor. Until recently, it wasn't clear how this virus interacted with the immune system. And this is important to understand when you realize that about 90% of the world population is carrying the Epstein Barr virus, but far, far fewer people actually develop Ms. Study results published just last week may provide those answers. Biologists discovered that in people living with MS, a specific type of immune cell called CD4T cells is hyperreactive to very specific parts of the Epstein Barr virus. Up until now, scientists have focused heavily on the virus while it was dormant or latent in the body. But this new research reveals that the T cells in Ms. Patients are actually locked onto the proteins that form the outer shell of the virus when it's actively replicating. In fact, the researchers found two and a half times more of these EBV specific CD4 T cells in individuals with untreated Ms. Compared to healthy controls. So why does this matter? Well, first it maps out the exact biological mechanism that causes the immune system to misidentify brain tissue as an active threat and attack myelin. And second, identifying this precise target gives scientists a clear path for developing highly targeted therapies, antiviral immunomodulations, and specialized EBV vaccines designed to stop this specific reaction before it ever starts. And if there's no reaction to ebv, there's no Ms. It's an incredibly hopeful milestone, and we'll be tracking how this translates into future research and clinical trials. If you'd like to review the details of the study, you'll find that link in today's show. Notes Newly published study results address one of the most frustrating experiences for anyone living with Ms. The sudden onset of symptoms that feel like a relapse but aren't necessarily caused by new disease activity. These pseudo exacerbations or pseudo relapses are often triggered by external factors like a fever, extreme heat, stress or just sheer exhaustion, but they send the same neurological signals as a clinical relapse. Now, historically, the gold standard for confirming whether someone is experiencing a relapse or a pseudo relapse has been an urgent mri. But getting an MRI isn't always fast, easy or affordable. So researchers at the Dallas VA Medical center set out to see if a simple blood test could do the heavy lifting. Instead, they evaluated the Octave MSDA test to see if this blood test could accurately distinguish a true MRI confirmed relapse from a pseudoexamine exacerbation. And the results are pretty compelling. The study found that the MSDA test was highly effective at identifying patients who had genuine MRI confirmed disease activity. In fact, when the research team compared it to analyzing neurofilament light, which is considered a reliable biomarker signaling nerve damage in the central nervous system, the MSDA test showed greater accuracy in flagging active relapses. So what does this mean for someone living with Ms. Today? Well, right now, if that person wakes up with new vision issues or weakness or numbness, the clinical default is either let's wait and see or let's schedule an mri. This study suggests we're at a point in time when a blood draw could provide your care team with immediate, actionable data. And when the symptoms are shown to be just temporary pseudo flares. This test could help someone avoid unnecessary courses of high dose steroids which carry their own side effects. Now, we aren't quite at the point when a blood test can replace the mri, but the Octave MSDA test represents a major step toward more personalized, rapid decision making. In the clinic. It's about getting the right treatment at the right time and steering clear of the treatment. You don't need just a reminder that the Octave MSDA test is not experimental, it's not investigational, it's not being tested. It's available today. And if you'd like to review the details of this study, you'll find that link in today's show. Notes. For 80 years, the National Ms. Society has reshaped the story of Ms. Their efforts, their investments have fundamentally changed what it means when someone hears you have Ms. And if you'd like some perspective on this, just talk to someone who was diagnosed 20 years ago and compare their experience, their options to what they are today. You know, on this podcast we often talk about the more than 20 different disease modifying therapies that are available today. Well, Society funded research has contributed to the development of every one of those FDA approved Ms. Therapies. Today the Society is focusing its research investments on stopping ms, restoring lost function and ending Ms. Forever. More than half of the Society funded research projects are focused on stopping Ms. In its tracks. That means no new symptoms, no no new damage, no more living with uncertainty. There are more than 30 projects being funded by the Society that are advancing biomarker research that could detect Ms. Earlier and early intervention translates directly to a better outcome for the patient. More than 50 society funded projects are working toward restoring myelin that's been damaged by Ms. And that means restoring the function that Ms. Has taken away. With 80 years of progress and over a billion dollars of research investment behind us, we're at a pivotal moment. A moment where you can step up and support research by supporting the organization that exists solely to support people affected by Ms. Your support will go toward powering $119.6 million in active research, accelerating that work that brings us closer to ending Ms. And when you give by July 31st, 100% of your gift will go to Ms. Research. If you're a regular listener, you know I rarely ask, but today I'm asking that. If you're able, please visit nationalmssociety.org research and make your donation and you'll find that link in today's show. Notes. If you're living with ms, you know that brain fog, that feeling of struggling with memory and focus? It's one of the most frustrating and one of the most common symptoms of the disease, affecting up to 70% of the Ms. Population. And frankly, we've been short on medical options to treat it. But results of a new study suggest the answer might be found in a surprising virtual reality. Researchers in Chile conducted a systematic review of 13 different clinical trials involving over 600 people with Ms. To see if VRB based rehabilitation actually improves cognitive function and the results were clear. VR based therapy is a safe, feasible and effective tool for boosting brain health. Specifically, participants using VR platforms showed measurable improvements in processing speed, executive function, those are the skills we use to plan and organize, and visual spatial memory. That's your ability to recall objects and their locations in the world around you. So let's look at the benefits of VR based rehabilitation. Traditionally, cognitive therapy can feel repetitive or disconnected from daily life. On the other hand, virtual reality offers what experts call ecological validity. It simulates real world environments like navigating a grocery store or managing a digital calendar. And that makes the training more engaging and impactful. In fact, the review found that adherence rates for these programs were over 80%. People stuck with it. Now we aren't talking about a cure and the research team emphasized that virtual reality should be considered a complementary tool. It works best when it's part of a broader care program with your occupational therapist or neurologist, but it's incredibly encouraging to see technology evolving to provide non pharmacological ways to offset that Ms. Related brain fog. If you're feeling frustrated by cognitive slips, ask your care team if a cognitive rehab program or even a home based telerehab program could be the next step in your personal Ms. Management plan. And if you'd like to review the details of this study, you'll find that link in today's show. Notes if you happen to be a woman diagnosed with Ms. And you're between the ages of 45 and 60 and are in the late reproductive stage, early perimenopause or late perimenopause based on menstrual history, you have an opportunity to participate in Ms. Research from the comfort of your own home by completing three online surveys about perimenopause and Ms. This national research study is being conducted by researchers at the University of Wisconsin, Madison, working with a team of national experts in Ms. Neurology and women's health and a community advisory board of women with Ms. And the goal is to better understand the experiences, needs and health changes of women with Ms. During the menopausal transition. In order to develop and provide needed information and resources. Each survey respondent will complete three online surveys over a period of about 10 months. Each survey should take 20 to 30 minutes to complete and a smaller group of participants will be invited to take part in a follow up individual interview to share more about their experiences. Please also keep in mind that women who are currently pregnant or within 12 months postpartum are not eligible to participate. If you do qualify to participate, please click on the link in today's show notes and become part of the research that's aiming to improve the lives of every woman living with Ms. We often talk about the clinical side of Ms. On this show, the latest research, the breakthrough therapies. But there's a parallel journey that happens alongside those medical appointments, and that's the internal experience of living with an Ms. Diagnosis. My guest, Liat Shalom decided to document that experience in a way most people don't, through the lens of a graphic novel. Her memoir, Unraveled, uses illustration to capture the raw, unfiltered, and sometimes darkly humorous moments of life with Ms. That just don't fit into anyone's standard medical chart. In a moment, we'll meet Liat Shalom. Liat Shalom describes herself as an award winning graphic novelist, Ms. Advocate and professional smartass who was diagnosed with multiple sclerosis at 30 in 2021. Rather than letting the diagnosis define her, Liott picked up her pen and began documenting her journey in a graphic memoir titled Unraveled. Welcome to the podcast, Liott.
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Thank you for having me. I'm excited to be here.
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A
Well, let's start way back in the beginning. Before you were diagnosed in 2021, you actually worked in film and TV production. What made you choose to share your Ms. Journey through a graphic novel rather than a script or traditional documentary?
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B
When I got sick. So first of all, when you get sick, there's a period of brain inflammation where the processing of information is very difficult. So I remember getting sick and having this probably year period where I couldn't really read long convoluted medical texts with a lot of big words I didn't understand. It was just all gibberish to me. And I remember thinking of myself like having a visual would be very helpful right now. While I was in the, in the hospital in recovery and there was nothing available and I kept asking my doctors, like, is there anything? Because my neurologist has had an attitude and it's probably the best piece of advice I was ever given to not google Ms. Couldn't agree more. Yeah, so he told me when I got sick, you have ms, here's a bunch of information you can read. Don't Google it, don't look it up online. And I was an inpatient during COVID so I wasn't interacting with any other patients. And that probably worked a little bit to my advantage because I had no idea what was ahead of me and how it was going to look.
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A
Well, I know that your Ms. Diagnosis came after you took a fall and a misdiagnosis at a concussion clinic where they completely just wrote off all your symptoms.
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B
Um, I was lucky that they even noticed I had a concussion, But I remember meeting up with a doctor at a certain hospital and telling him I was first dizzy, then I fell, not I fell, hit my head and became dizzy. So I tried explaining this to him, but he. He wrote that off as this is long term post concussion syndrome. And. And throughout two years, it kept seeing me and sending me for cognitive assessment, and I was getting worse. And at no point did it, like, throw out the red flag of, like, this patient needs an MRI or needs further testing. So it's a typical Ms. Story in that regard of. I think a lot of us get misdiagnosed, and it's always a battle to get to the diagnosis. So this is. So I wanted to share my personal battle, make others understand that, like, the confusion is part of the Ms. And other people go through it too, and we all share the same indignities of the disease. And I just. I kind of created my own community by making the book and sharing it online.
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A
So how did you channel the frustration of not being heard by the medical community into the early pages and sketches of Unraveled?
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B
I definitely documented my hours in the emergency room. In particular, I was in Canada. The system's very overwhelmed, and I was 17 hours in an emergency room hallway until I got an mri. It was quite insane. So documented that, Documented the procedures of going in and not being heard and meeting with the same doctor over and over. That was very frustrating. And sadly, in Canada, you can't. You can't sue a doctor. You can't really seek any legal retribution against any medical professionals. So I really had to channel everything into the book because there was no other way to be heard.
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A
Your portfolio features a great illustration that maps Ms. Symptoms directly onto the body. Now, medical illustration is usually very cold and clinical, but yours balances health communication with really deep artistic expression. How do you approach drawing something abstract and frustrating, like nerve pain or brain fog or tingling sensations?
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I'm you. I'm drawing a lot from comic book language. That's why I feel like graphic novel is the perfect medium for this. And maybe later I'll be able to translate the feelings into a script. But I really felt like certain things, like the tingling in the hands, there's no better way to show it than, like, the little zigzags and the doubling of lines. And I find myself describing to my neurologist things in a very visual way when I go in anyways, so I felt like I wanted to bridge our conversation, the medical jargon, and what I'm actually feeling into visuals.
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A
Ms. Can drastically affect manual dexterity and energy levels. What did the actual physical act of sketching and coloring look like for you on days when your body wasn't cooperating?
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B
So my diagnosis was extremely complex. I had a very strong onset of Ms. Due to different medication. I won't get into the whole history, but I had body paralysis on the entire right side of my body. I'm right hand dominant. So I essentially overnight couldn't walk, couldn't use my hand, lost my career even before I figured out what a mess was. I figured out I can no longer go to set and work 12 to 14 hours a day according to my film contract. So that was just a very sad morning period. And then once I finished that, that kind of sadness, that came on for like a few weeks and started dealing with the mood swings, which was another thing I wasn't aware of. And I started working with an OT at a hospital called Bridgepoint, which was a lifesaver for me. Me and her sat down and wrote down goals. She wrote down goals, and I told her that my goal is to be able to draw again. And we started slowly working on, like, here's the circle, here's the line. Let's, you know. So we slowly start incorporating that into my recovery. And when I did that, I was extremely motivated again. And I made it a goal when I was in recovery to not only use my hand again, but be able to illustrate a full graphic novel. When I left the hospital and started physically drawing again, I realized it was a lot more difficult. I do have my handshakes. I have dexterity issues that sadly never went away fully. So for me, it was figuring out what technology I could use to correct what my hand was doing. And luckily I found the iPad. And the iPad has a stabilization feature when you're drawing that counteracts the mess. So it created a situation where I could draw the way I naturally draw. And it was just amazing. So I started learning this new tool and took me about four. I thought it would take like one year. And I was very optimistic. But four years later, the book is finally coming to close to a wrap. I'm hoping to get to print by October.
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A
Well, as you point out on your website, which our listeners can find@unraveledgraphicnovel.com, mainstream media often flattens chronic illness stories into two extremes. Either a devastating tragedy or an overly sanitized. My goodness, you're so brave. Inspirational piece. Your stated goal is to show that life with Ms. Is messier, funnier and more human. So how did dark humor become such an important survival tool for you?
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I think just being of the cultural background that I am, which is I grew up in Israel, I'm an immigrant, immigrant from not very beloved country and working in film and just everything I've been through has made me very resilient, but also have a very positive and kind of look at the humor and things attitude about life. And I think it made me be able to accept the Ms. Diagnosis. For me, it was like developing a radical acceptance and then finding humor in it. And I think my, my neurologist was kind of shocked how I, I would make like really dark jokes with him right away. And I saw it created like a, a happier atmosphere for the staff as well, because I feel like they come into my room and they'd be all sad like, oh my God, you're so young. This is so sad. And I'm like, you know, try to find a different way to frame things because I really didn't like that narrative. So really I feel like my whole project and my existence and way of being is about thriving with Ms. Well,
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A
I just heard you use that term, radical acceptance. I wanted to ask you about it because I know you've spoken about that concept as a means of thriving with Ms. Rather than just surviving. What does radical acceptance mean to you in practice and how does that philosophy show up in unraveled?
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Radical acceptance, funny enough, comes from the idea of accepting the things you cannot change and finding the most positive way to deal with them, but also pushing yourself. And for me, that's what it was. It was accepting it and then finding a new way to frame my life and push myself to do great things within my ability, my new abilities.
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A
Unraveled functions as both a personal memoir and a user friendly roadmap for patients, families affected by Ms. And healthcare providers. If someone who's been newly diagnosed picks up your book, what do you hope they take away from it?
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B
I hope they take away from it, first of all, that they're not alone. The exact same confusing things are happening to other people and you will, at the end, find a way to cope. It gets better. I heard the word progressive when I got sick and it really upset me because when I was sick, my neurological condition at the time before I started biologic medication was so bad That I felt like I lost all capacity to understand life. And I felt very alone. Like I said, it was Covid. I couldn't have visitors. I couldn't interact with other patients. It was the extreme of isolation. It was difficult to accept that I had Ms. At 30 years old. I remember having a lot of questions about the future. And the doctors and nurses are very encouraging about one step at a time and, you know, don't freak out about the bigger picture, but it is very difficult not to do. So I wanted to create a book where people could kind of skim forward to the end or to the middle and find where they are and that it. And it does get better. Better in the process.
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A
Okay, now, on the flip side, what do you hope neurologists, physical therapists, occupational therapists, and other healthcare providers learn about the patient experience by reading Unraveled?
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B
I hope that they see the patient as a whole. I find that different doctors have different specialties, and they tend to. Let's say the neurologist sometimes will know a lot about the medication treatment, but he won't know anything about the diet treatment or alternative therapies. And I find that in the Ms. Community, there's kind of an attitude of one or the other. People tend to be either very, I'm doing everything naturally or I'm going exactly by what the doctor says. I do both. I found the middle, and that works for me, and I hope I can share my experience. Experiences with others. It's a very snowflake disease. We're all different. So what works for me might not work for others, but I want to be a positive inspiration in our community.
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A
I think that artists learn about themselves through their work. Looking back at your journey, from your diagnosis back in 2021 to releasing this graphic novel, what did you take away from the process of writing and drawing Unraveled?
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B
The book developed as I was learning the disease, really. So it's just been an interesting learning curve. And I feel like this book will probably be like the first of a series because, again, the disease progresses and hopefully the medication will get better and maybe even a cure, you know, so lots of room to grow the book, hopefully in the future. But I hope that what I've learned, essentially what I've learned. Well, sorry, that's a really difficult question. I've learned how to. How to manage the disease, and I've learned that we're a community that shares information from one to the other that doctors wouldn't necessarily know. So I think I've learned that the community aspect of our disease is extremely important, and I've seen it by the reactions of readers to my well, the book isn't out yet, but the Instagram page is. And I get responses from people that like, found my page and are newly diagnosed and feel like they're less alone and found the community and understand what's happening better. So that's that's all I could have asked for. That's what I'm learning. Is that as terrifying as it was for me, it feels the same for everyone.
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A
We've been discussing the graphic novel Unraveled. I've already ordered my copy and you can order yours by visiting Unraveled. Graphicnovel.com Liat Shalom thank you for raising awareness by sharing your Ms. Journey through a fairly unique medium. And thanks so much for talking with me today.
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B
Thank you so much for having me. It means so much.
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A
That's going to wrap up this episode of Real Talk. Ms. Real Talk Ms. Is powered by the National Ms. Society and you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser@realtalkms.com 464. You'll find that link in today's show Notes, so you can easily copy and paste it right into an email or a text. I think that it's human nature to understand things from the perspective of where we happen to be planted. If you're living in the us, you tend to think about Ms. Research and Ms. Care in terms of the health care system here in the United States. And if you're living in a European nation, you think about those things as they relate to healthcare in the European Union. But let's assume for a moment that your country isn't the United States. It's not in Europe. In fact, it isn't a Western country at all. My guest next week is Dr. Avinash Chandra, an Ms. Specialist who trained at a world class Ms. Center in the United States, only to return home to Tibet to discover that Ms. Was officially considered non existent in his country. This is a conversation you won't want to miss. I'm John Strum. Thanks for listening. Stay safe and make healthy choices.
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It.