Dr. Karin Hehenberger has close to 20 years of experience in the life sciences sector. She served as an executive at Eyetech Pharmaceuticals and Coronado BioSciences, and had strategic management roles at Johnson & Johnson (Vice President, Metabolic Strategy), JDRF (Senior Vice President, Strategic Alliances), and McKinsey; as well as senior partnership roles at public (Brummer & Partners) and private (Scandinavian Life Science Ventures) multibillion-dollar investment funds. She received her MD and PhD degrees from the Karolinska institute, and did her post-doctoral fellowship as a JDRF stipend recipient at the Joslin Diabetes Center, Harvard Medical School. Inspired by her background and diagnosis of type 1 diabetes, she is the founder and CEO of Lyfebulb. Tune in as Karin shares: that she was always in good health — but that at the age of 16, this changed that shortly after, she was diagnosed with type 1 diabetes the fear that came along with her diagnosis what she wishes she’d done differently after her diagnosis that she spent the first decade after diagnosis largely hiding it from the world, even though it played a role in shaping her career that when her dad donated a kidney to her 12 years ago, doctors also suggested she get a pancreas transplant simultaneously what qualifies diabetes patients for pancreas transplants how she recognized that patients can be innovators — and how this inspired her to launch Lyfebulb how she also realized that patients need patients — and how this plays into Lyfebulb’s community today how she manages the side effects of her immunosuppressants the importance of educating care partners in the nuances of chronic disease — and how vital it is that patients learn to ask for what they need the obstacles presented by the American healthcare system what it was like to entertain motherhood as a patient on immune-suppressing drugs 

Uninvisible Pod with Lauren Freedman

137: Lyfebulb Founder Dr. Karin Hehenberger

Jemma-Tiffany is a 17-year-old writer, passionate patient advocate, and founder of Hyperacusis Awareness. Having grown up with severe hyperacusis (a rare and poorly-understood disorder that causes her to experience physical pain from everyday sounds) has motivated her to raise awareness of others with similar conditions. Through her various efforts, Jemma has gained experience in patient advocacy and legislative change campaigning, and has been able to participate in numerous awareness-raising events. The goal of her work is to create a world in which those with hyperacusis, chronic pain, and rare disease are believed — and are offered all the unique environmental modifications and services they need to live pain-free, comfortable lives. Her current advocacy projects include: adding a title 6 (Telepresence and High-Level Sensory Modifications) to the ADA; collaborating with research scientists and the American Academy of Audiology to establish clinical practice guidelines to protect those with hyperacusis; establishing a national awareness week for the condition; and a recent Hyperacusis Awareness Conference; as well as a campaign to extend distance-based learning (implemented during the COVID-19 pandemic) for disabled students in need. Jemma-Tiffany has been featured and published by Migraine Magic, PatientDX, the Hearing Health Foundation, the American Chronic Pain Association, Rare Youth Revolution, and The Third Estate, among others. Tune in as Jemma-Tiffany shares: that she was born with cataracts, and is low vision/legally blind that she didn’t start experiencing issues with sound until she was about six years old that she was initially diagnosed with chronic migraine, but was eventually diagnosed with hyperacusis that hyperacusis was originally thought to be a psychosomatic condition — and as such, she has had to endure a lot of painful treatments how diagnostics have changed in recent years, as it regards hyperacusis that there is currently no complete treatment for hyperacusis what hyperacusis is, and how it can affect patients differently that the cause of hyperacusis is unknown, even in Jemma-Tiffany’s case how she has grown into a patient advocate how COVID has positively impacted her educational experience, enabling her to receive more supportive accommodations why she was driven to attempt suicide how she has been gaslighted over and over — in medical settings and beyond how some alternative therapies have helped her (though they have not cured her of her pain): TENS and PEMF, among others that she has been doing her own medical research since she was 11 years old, in order to present information to her doctors what she’s working on right now her advice for other young people living with chronic pain 

136: When It Hurts to Hear — Hyperacusis Awareness Founder Jemma-Tiffany

* * * TW / CW : mortality, and graphic discussion of the events during and in the aftermath of 9/11, 2001 * * * Twenty years after 9/11, some first responders are still struggling with long-term health complications brought on by the historic event. For Tom Frey, a former NYC detective, the consequences started with a diagnosis of Hodgkin’s lymphoma — the treatment for which then caused pulmonary fibrosis (PF) — a life-threatening, incurable lung disease. His illness can be linked back to inhaled dust from his rescue and recovery efforts at Ground Zero. Tom’s not alone. Officials worry that deaths of 9/11 first responders due to illnesses caused by exposures at Ground Zero will soon outnumber deaths of those who lost their lives that day. Despite Tom’s terminal health struggles, he works hard to drive awareness, research, and funds for a cure for pulmonary fibrosis – especially during Pulmonary Fibrosis Awareness Month, which happens to be in September. A true hero, Tom will tell you he would do it all over again tomorrow, even as he struggles daily to breathe and relies on oxygen. Tune in as Tom shares: how he was first diagnosed with Hodgkin’s lymphoma in 2016 — as a result of inhaling toxic dust during and in the aftermath of 9/11 how one of his chemo drugs caused his pulmonary fibrosis diagnosis that the only cure for PF is a lung transplant — and his has been on hold because of COVID how the Pulmonary Fibrosis Foundation has changed his life the trauma of working in rescue and recovery after a disaster like 9/11, and the importance of talking about it how waiting to die — and not dying — forced him to live again…and why he hasn’t stopped moving since who his heroes are: nurses and doctors that while the average life expectancy for pulmonary fibrosis diagnosis is 2-5 years, with the right support it can be extended the difficulties he’s had dealing with the United Healthcare World Trade Center Fund to cover his life-saving treatments his plea that we take sensible precautions against COVID — like wearing masks a look back at what it was like on the ground on 9/11, and in the days following the attacks a reminder of all the individuals who were on the ground on 9/11, and whose lives and health have been impacted as a direct result 

135: Defining Heroism: A 9/11 First Responder’s Story

Sara Naveed is a Canadian writer, chronic illness advocate, and founder of the blog Fabulous and Fatigued. 14 years ago, she was diagnosed with fibromyalgia following a hit-and-run. Inspired by her experience, she started the blog with the aim of creating awareness and ending the stigma of life with chronic illnesses. Her work has been published in various media outlets and platforms including Yahoo, MSN, The Mighty, The Tired Girl Society and DPC Education Center. Tune in as Sara shares: details of the hit-and-run that eventually triggered her diagnosis what the diagnosis and acceptance processes were like for her, as a teenager how chronic pain has changed her life how fibromyalgia manifests in the body how discovering accessibility services supported her in college that taking holistic approaches to her symptom management has been very supportive for her where she has encountered “toxic positivity” in the reactions of family and friends how her diagnosis has impacted her relationships how she has worked on her mindset to cultivate balance in her life her experiences of acceptance and bias within the medical system, as a Muslim woman of South Asian heritage why she uses CBD to manage symptoms from insomnia and anxiety to chronic pain how the immigrant experience — from a language perspective — impacts healthcare access how the Canadian healthcare system needs improvement in order to better serve patients a reflection on her early experience of chronic illness, and how it inspires her current work the importance of community in ongoing healing and acceptance 

134: Sara Naveed is Fabulous & Fatigued

Jenny McGibbon is a disabled graphic designer from Scotland, predominantly living with ME/CFS. She was born with a birth defect known as gastroschisis, and as a result she also lives with short bowel syndrome, chronic internal bleeding, and iron deficiency anemia. At the age of 16, she found herself in and out of hospital almost weekly — something that would continue on for some years. She couldn't relate to her peers anymore, and felt alienated in the new medical space she suddenly found herself occupying. Often the youngest person in the waiting room (by several decades), it became abundantly clear that none of the marketing, pamphlets, posters, or websites she was directed to were aimed at her demographic — or acknowledging her unique experience. So she took to the Internet to share her story — This Thing They Call Recovery. With a blog read in over 90 different countries, translated into over 50 languages, and a social media following of over 25k, Jenny is trying to get the word out: chronic illness can look like anything, happen to anyone, and everyone deserves to feel supported. Now in her mid-20s, Jenny is determined to help make sure no young person feels like they're dealing with health issues alone, and is committed to challenging the public perceptions of disability, sparking complex conversations and uniting Spoonies and their loved ones together. As a graphic designer, she uses a mix of visuals and copy to translate how life with illness feels, particularly when one is young. As she says: “I think there needs to be much more information out there about health — and ill health — presented in a friendly and approachable manner. Chronic illness affects your life as much as your body, and I think it's time more people knew about it.” Tune in as Jenny shares: how her chronic illness journey began in childhood, with gastroschisis and bowel surgeries that from the ages of two to 16 she was largely well, but that at 16 flares surfaced again through chronic bleeding in her intestines — which also caused iron deficiency anemia that she was eventually diagnosed with ME/CFS, but had to deal with a lot of pushback from the medical establishment how she got an ME/CFS diagnosis the symptoms that impact her most acutely — pain and fatigue a discussion of the social complexities of living with disability — from gratitude and “cures” to comfort zones, accommodations, accessibility, pride, and “passing” why she owes her life to the NHS how and why she started This Thing They Call Recovery what disabled identity means to her what the community she’s cultivated means to her why there doesn’t always have to be a lesson or a silver lining in the disability experience — sometimes it just is what it is 

133: This Thing They Call Recovery’s Jenny McGibbon on The Nuanced Experience of Living with a Disability

Cassandra Rush is a lupus advocate born and raised in Los Angeles, CA. In 2012, after a two-year battle with an undiagnosed illness due to being uninsured, she was finally diagnosed with Systemic Lupus Erythematosus (lupus SLE). Two years later she was diagnosed with lupus nephritis. An “accidental advocate”, she speaks out about the broken US healthcare system, with a particularly detailed lens on medical racism and systemic bias. She was recently selected as a subject in the documentary series Trust Me, I’m Sick (now streaming on SoulPancake), wherein she shares about her life with lupus. And she’s on the pod to tell us even more. Tune in as Cass shares: how she was gaslit at the early onset of her illness that she was 22 when she first got sick that her diagnosis has brought her to the brink of her own mortality how her battles with health insurance have caused emotional distress over ongoing debt how her diagnosis brought her closer with her mom how her diagnosis has affected her mental health how the COVID pandemic has played into systemic ableism how her diagnosis has affected her plans for the future the irony that accommodations have readily been made available in the workplace because of the pandemic, but that the disabled community has been requesting them for decades access issues in healthcare, from financial obligation to racism 

132: Lupus Advocate Cass Rush

Faith Ashenden is the founder and CEO of That Healing Feeling. She is a global patient empowerment mentor, master mindset coach, and biohacking expert who helps women hack the system and get their health back holistically, using 1-1 coaching, online courses, a podcast, and social media accounts with over 40k+ followers. Faith empowers people to ask the right questions, bust through limiting beliefs, detox their environments and bodies, and start using food as medicine. She’s also overcome Graves’ disease and Adderall addiction…and she’s on the show to share her story! Tune in as Faith shares: that she underwent radioactive iodine treatment for Graves’ disease that she has also healed her gut from Candida and SIBO, and her immune system from EBV — all through holistic methods how she developed Adderall addiction, and kicked the habit why her Graves’ disease was so difficult to diagnose how she’s detoxed her day-to-day and reorganized her life with her wellness as a priority why the root-cause approach to healing is so important to her — and why it can be financially inaccessible to many some suggestions to switch-and-ditch and reduce daily toxin exposures in your home and life 

131: Faith Ashenden of That Healing Feeling

Damian Washington is an actor who’s done 30+ commercials for brands like Fruit of the Loom, Realtor.com, and the NFL. Originally hailing from NYC, he attended the prestigious LaGuardia High School for the Performing Arts (Fame, anyone?!). A few years ago, he was diagnosed with multiple sclerosis (MS)…and soon discovered that developing an MS community is the best way to share his light with the world. Damian’s weekly YouTube channel has several thousand engaged subscribers; he sits on Genentech's Patient Advisory Board and the MS Focus Patient Advisory Group; and he makes content for MS Views & News. He’s also been featured by the National MS Society and Shift.MS. Damian was the winner of the WEGO Health Award for Best in Show: YouTube in 2020. Some say they find the silver lining in the dark MS cloud, but Damian says he’s turning poop into flowers…and that the engaged community that's developed out of his shares is one of the best things to come from this horrible disease. Tune in as Damian shares: that his wife was the first to note a dip in his energy — which led to his MS diagnosis, about three months later why his diagnosis was both a validation and a relief why he’s open to multiple approaches to his health why meditation has been a useful tool for him — and how he learned to meditate with a friend when he first moved to LA how his identity forces him to navigate prejudice, and potentially triggering situations how sharing his MS journey launched his YouTube channel into visibility his lessons for others living through similar experiences 

130: Actor & MS Advocate Damian Washington

Dani Donovan is a purpose-driven designer who creates cathartic ADHD (attention-deficit/hyperactivity disorder) illustrations and a community of validation and solidarity for adults living with ADHD. Her first infographic, “ADHD Storytelling,” went viral within hours and amassed over 100 million views. Her work has been reposted by celebrities like Mindy Kaling and featured in publications like the BBC. In a few short months, Dani’s relatable comics and her #NeurodiverseSquad hashtag helped her quickly become a prominent voice in the online mental health community. Her comics, jokes, Twitter threads, and TikTok videos aim to help those with ADHD understand themselves, feel a sense of belonging, and better explain their invisible struggle to loved ones. Dani’s influence has helped hundreds of people seek diagnosis and treatment for ADHD. She recently left her full-time job to create ADHD content full-time; you can support her work at patreon.com/danidonovan or view comics (and her online shop!) at ADHDDD.com. Tune in as Dani shares: that she also lives with bipolar II and undiagnosed EDS (Ehlers-Danlos Syndrome) why “annoying” is a trigger word for her that she was initially diagnosed with depression; then subsequently dysthymia (persistent depressive disorder), anxiety, and panic disorders how her ADHD presented very differently from the way it did among boys her age, which made her fall under the radar of diagnosis until she was in college how ADHD affects her daily executive functions and impulsivity how her behavior doesn’t always align with her expectations, and leads to a cycle of guilt and shame how avoidance plays into ADHD symptom manifestation, and can become debilitating how ADHD and OCD can occur concurrently how her ADHD impacts continuity of care within the medical system “ADHD tax” — when those living with ADHD end up paying more than others because the system is stacked against their success why forming new habits is tremendously difficult for those living with ADHD how her art allows her to communicate her experience with purpose how her work has changed lives — and why that gives her ongoing purpose why social media has been such a rich resource for her her advice for living with ADHD and neurodiversity 

129: ADHD Advocate Dani Donovan, Illustrator & Creator of #NeuroDiverseSquad

Tiffany Yu is the CEO & Founder of Diversability, an award-winning social enterprise to amplify disabled voices; the Founder of the Awesome Foundation Disability Chapter, a monthly micro-grant that has awarded $49.5k to 50 disability projects in 8 countries; and the host of TIFFANY & YU, the podcast. She serves on the San Francisco Mayor’s Disability Council and was a 2020 Co-Chair of the World Economic Forum Sustainable Development Impact Summit. At the age of 9, Tiffany became disabled as a result of a car accident that also took the life of her father. She started her career in investment banking at Goldman Sachs and has also worked at Bloomberg and Sean Diddy Combs' REVOLT Media & TV. She is a 3x TEDx speaker and spoke on 5 sessions at the World Economic Forum Annual Meeting in Davos. She has been featured in Marie Claire, the Guardian, and Forbes. Most recently, Tiffany was named one of TikTok's 15 API Trailblazers. It is through this platform that she posts amazing educational content, including the "Anti-Ableism Daily". Go check her out! Tune in as Tiffany shares: her “disability origin story”, which left her permanently disabled — and also took her father’s life that she was most recently diagnosed with PTSD related to the accident that caused her disability her take on “toxic positivity”, and how it manifested in her life akin to internalized ableism how her identity as the daughter of Asian immigrants has shaped her experience: “the nail that sticks out is the first to get hammered down” visibility and invisibility in the disability experience what disability inclusion really look like why TikTok has been such an important space for her to occupy in anti-ablest allyship what an ableist micro-aggression is — how to spot them and feedback mindfully how she taught herself to own her disability — and how this realization was the foundation of Diversability four tips for being an ally to the disabled community 

128: Diversability Founder Tiffany Yu

In 2012, while studying at university, Mimi Butlin contracted viral meningitis — from which she never fully recovered. Since then she has been diagnosed with Ehlers-Danlos syndrome, fibromyalgia, postural orthostatic tachycardia syndrome, and ME/CFS (as Mimi wryly notes, “a really lovely bunch!”). For years, she felt completely alone and that convinced she was responsible for her pain. In 2018, she started the Instagram account @CantGoOut_ImSick, a platform where she posted drawings of what living with illness was like — including portraits of other chronically ill women who had gone through similar experiences. Because of her work, including the #BelieveUs campaign, she has been featured in Women’s Health magazine, Grazia magazine, and on Refinery29 and Bustle. Recently, she collaborated with disability charity Leonard Cheshire to create the #DisabledLooksLikeMe campaign to raise awareness of invisible disabilities. Mimi is very proud of what was achieved throughout the campaign, which saw disabled influencers, creatives, and celebrities — such a Selma Blair and Sinead Burke!! — wearing her t-shirts and supporting the campaign on social media. She is currently taking a break from her work in order to accommodate her health (and wow, can we relate), but she’s extremely grateful to the people she has met along the way, who have helped her accept her conditions and feel proud of who she is. Tune in as Mimi shares: that of all her symptoms, chronic pain is most in control of her day-to-day that she was diagnosed with viral meningitis, and subsequently with Epstein-Barr Virus (EBV, or mono) and gastroenteritis — multiple times — and never fully recovered a discussion of access issues in healthcare, including the NHS and optional paid enhancements why doctors have a responsibility of care — both emotional and physical how mental health and medical PTSD have played a role in her health experience how she first received notice for her art — from fellow Spoonie, Lena Dunham! how her illnesses changed her relationship with her mum why she recommends those who identify as female bring a cis man with them as an advocate in doctors’ appointments her experiences of not being believed by medical practitioners who has inspired her in the disability community how she’s cultivated pride in her health status how research can give you perspective on your experience — and the experiences of others 

127: Spoonie Artist & Activist Mimi Butlin of @CantGoOut_ImSick

In 2009, Juana Mata was diagnosed with lupus. One of three very close sisters, nobody in her family had heard of this illness prior to her diagnosis — or knew how to handle her support and treatment. As the family began to research education, resources, and the history of the disease, they began to discover that it was largely misunderstood, and that it needed awareness-raising to fund research for a cure. The sisters began gathering in therapeutic loom knitting circles as they processed their experience. They recognized how supportive this art therapy was in relieving their stress, and wanted to extend this gift to others in their community. In 2011, they founded Looms for Lupus, a non-profit providing resources and awareness to those affected by lupus, fibromyalgia, and other comorbid conditions — with a focus on the needs of minorities and families of color. Working with local, national, and global organizations, Looms for Lupus forms partnerships with similar agencies and patient care facilities to provide support and resources. Their aim is to create an environment to reassert a sense of hope during a time of illness, and to empower individuals to take charge of their lives through chronic — and sometimes life-threatening — illness. Tune in as Estela & Juana share: what Juana’s early symptoms of lupus were — and that she was initially diagnosed with rheumatoid arthritis (RA) that Juana had to argue with a doctor (who wanted to write her off as anxious) in order to get her diagnosis and be heard — and that by the time she was diagnosed, her life was in peril that if Juana had not advocated for herself, she wouldn’t be here today how Estela was diagnosed with fibromyalgia, along with her daughter why Estela pursues holistic treatment to manage her pain the distinct role of “invisibility” in their illness experiences their experiences of bias in the healthcare system why they created Looms for Lupus, and the importance of providing patient resources in Spanish their tips for managing chronic illness with grace 

126: The Mata Sisters, Founders of Looms for Lupus

Alexa Chronister is the founder and president of Fight Like A Warrior (FLAW). She created FLAW after creating the Cards For Warriors program (sending handmade cards of encouragement to chronic illness warriors across the globe, reminding them they are not alone) in 2016. With the goal of creating a community of empowerment and improving the lives of those with chronic health conditions, she developed FLAW as a way to cope with her own health challenges, while giving back to others (and won a WEGO Health award in 2019 to prove it!). In 2020, she received her bachelor's degree with honors distinction in public policy (with a minor in social entrepreneurship!) from the University of Delaware, and completed a thesis focused on health policy and disease advocacy among POTS patients. Never a shrinking violet, she also plans to attend law school and pursue a career in health policy. In response to the COVID-19 pandemic in 2020, Alexa was instrumental in launching FLAW’s #ProtectTheVulnerable campaign, in partnership with numerous patient advocacy platforms including Health Advocacy Summit (founded by former guest Sneha Dave!), Support Fibro (founded by former guest Melissa Talwar), and InvisiYouth (founded by former guest Dominique Viel), among others. Alexa has a passion for working with individuals and communities to advance policy, advocacy, and entrepreneurial efforts, particularly within healthcare, focused on improving access and reducing inequity. [A note that this episode was recorded a year ago, hence features some dated mentions of the #ProtectTheVulnerable campaign and Alexa’s recent college graduation!] Tune in as Alexa shares: how she was diagnosed with hypermobility syndrome in childhood and, later, Ehlers-Danlos and POTS (postural orthostatic tachycardia syndrome) how she has learned to step up into the advocacy space how she manages her health day-to-day why it’s so vital our various practitioners find ways to communicate to one another about our cases how access directly impacts healthcare outcomes and patient experiences what inspired her to start Cards for Warriors at the age of 18, and how it laid the groundwork for what would become Fight Like A Warrior why it’s so important to listen to our bodies, especially as Spoonies the importance of self-advocacy what the future holds for FLAW 

125: Fight Like A Warrior Founder Alexa Chronister

Julian Gavino (he/him) is a trans-masculine model, writer, coach, and sex-positive disability influencer living with Ehlers-Danlos syndrome and comorbidities. An outspoken advocate for both the trans and disability communities, Julian grew up never seeing people in media who “looked like” him…and his work has become a direct response to that experience. Many may know Julian through his Instagram account @TheDisabledHippie, which he started during a health crisis while in college for neuropsychology. Now a coach serving the disabled and LGBTQIA+ communities, he has also become a social media expert and co-founder of Disabled with Dignity, a platform featuring disabled stories — by disabled people, for disabled people. In his work, Julian aims to normalize and destigmatize trans and disabled bodies in media — by facing discrimination down and creating space for representation. Tune in as Julian shares: that he started experiencing symptoms from the age of 5, from digestive distress to dislocations — and was initially diagnosed with Celiac that he largely uses his wheelchair these days, in order to support his mobility that he was recently diagnosed with Hashimoto’s disease, but has been monitoring his thyroid health from an early age that as far as he knows, most of his diagnoses are likely connected to EDS the most significant impact on his health in his adult life: his neurological conditions, including a demyelinating neuropathy similar to MS that can flare without warning the emotional toll of his health conditions — from awareness of mortality to a young age, to the validation of diagnosis that growing up female meant that he was gaslighted over his health frequently how he stepped into self-advocacy that he started his Instagram feed as a way to manage his emotional journey through disability that his treatments include infusions, a feeding tube, multiple medications, physical therapy, and more the supportive role his service dog, Atlas, has played in his life — both physically and emotionally how his gender identity has influenced his experiences within the medical system — including threats to his safety from professional caregivers his thoughts on healthcare reform 

124: Julian Gavino, @TheDisabledHippie

Shayla Swint is a 25-year-old college grad from Houston, Texas. Like the old adage, “Don’t judge a book by its cover,” Shayla is so much more than what we can see…she lives with connective tissue disorder Ehlers-Danlos Syndrome (EDS), hypermobile type. She’s survived over 15 surgeries thus far, and lives in an almost-constant state of pain and anxiety due to the condition. When she says that “her body’s trying not to fall apart,” it almost seems an understatement. And yet…she manages to keep going. In this interview, she tells us her story. Tune in as Shayla shares: that she suffered from numerous injuries during physical activity in childhood, and her hypermobility was also present at this early stage of development that early on, her orthopedist suspected she had EDS — but was unable to provide the genetic testing to confirm it that she was finally diagnosed with hypermobile EDS a decade later that between the ages of 13-18, she had multiple surgeries — and didn’t get her official diagnosis until 2 years ago, at the age of 23 why her diagnosis was validating that one rheumatologist told her, “Black people don’t get EDS” — and her response was to lose all trust in the system for a time the importance of mental health support — and that it was never recommended as part of her diagnosis or treatment plan…but, thankfully, by her mother that she’s been exploring a vegan diet in order to reduce inflammation that her mom has chronic migraine — and understands what it’s like to advocate and live in chronic pain how she has disclosed and managed her pain in work environments — and where she’s struggled to achieve easy accommodations (even when she presented solutions) how triggering it can be to pursue legal action in disability cases — and why so many individuals don’t do so why remote work during COVID has been so much more comfortable for her the difficulties she had receiving disability accommodation during college, and why her disability being invisible made that fight even harder how her race has impacted her treatment in the medical system the impact of community on her experience, especially as a WOC why change in our healthcare system is so desperately necessary 

123: Don’t Judge A Book By Its Cover: Shayla Swint on Life with EDS

A podcast about invisible conditions and chronic invisible illness, featuring interviews with survivors, their loved ones, advocates, and experts in varied healing modalities, from medical to holistic. Hosted by Lauren Freedman, a voice actor, writer, and activist, who lives with Hashimoto’s disease and sleep disorders, Uninvisible uncovers real stories of survival and humanity – complete with laughter. In truth and with candor, we offer solutions – and challenge the world to change.

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Uninvisible Pod with Lauren Freedman

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