Subscribe
Uninvisible Pod

Uninvisible Pod

An award-winning health podcast about invisible & chronic illness & disability.

Latest From Series

105: Naturalist Brittany Sumner on Living with Rare Disease Paramyotonia Congenita

Born and raised in South Carolina, 27-year-old Brittany Sumner always felt like she was different than her peers — both physically and mentally. At an early age, she began falling over without explanation, finding herself unable to climb stairs, going cross-eyed, experiencing slurred speech, choking on food, and feeling almost constant fatigue. It took some time to find a specialist who truly saw her symptoms as something more, and was finally able to diagnose her with a rare condition called Paramyotonia congenita (PMC). While the diagnosis gave her a sense of relief, it also scared her. What if she couldn't do the things she loved so much? What if she couldn't get a job because of her muscle disorder? Fast forward to her adult life: she is a wildlife biologist, outdoor educator, and conservationist. While she’s currently unemployed because of COVID-19, before the pandemic started she was working as a naturalist — taking students on hikes, teaching them about ecology and the outdoors, and leading conservation and sustainability study-abroad trips for high school students. Her passion is the environment and teaching the next generation about the importance of protecting it. While she’s busy inspiring kids, her students inspire her to get out of bed each morning, too — especially when she is having a bad pain day. In her free time, she loves to kayak, garden, hike, read, and spend time with her new niece! Tune in as Brittany shares: how she realized something was up…her muscles were recovering much more slowly and keeping her behind her peers physically, among other symptoms that she grew up in rural South Carolina, which affected access to the right kind of medical care for her condition that adrenaline makes her condition worse — so a fight-or-flight reaction can be very dangerous for her that the diagnosis was, in part, a relief for her — because it validated her sense that she was living with a condition that was affecting her body that PMC requires genetic testing to confirm — but nobody in her family has the gene mutation. However, there’s a 50% chance she can pass the disorder to her future children that PMC isn’t curable, and that the side-effects of medications she tried actually made her symptoms worse — she she opted out of medication and turned to lifestyle and nutrition that potassium and sodium most directly affect her muscle spasms that figuring out her triggers and symptom management has been a process of trial and error that she only connected to others living with PMC in recent years that the severity of symptoms and response to treatment varies widely from patient to patient her keys to successful movement: water, breaks, and snacks that extreme cold can cause paralysis for her how she’s working on communicating about her condition — especially because it’s invisible how gender has impacted her medical care how awareness is impacted by lack of research funding, and vice versa — where rare diseases often get lost in the shuffle that those living with PMC can’t go under general anesthesia (because of its potassium content) — and she still needs to figure out how to alert emergency care if necessary how she finds solace in nature
December 2, 2020

104: Special Needs Siblings Founder Jeniece Dortch

Jeniece Dortch is a mom of six, her children ranging in age from 4-16 years. She has a passion for the special needs community that was born when her second-eldest son, Christian Garcia, was diagnosed with autism and epilepsy. She not only saw the need to advocate for these communities, but for the entire family unit (even those who are able-bodied) as inclusive members of the special needs community. With this idea in mind, she formed Special Needs Siblings, Inc. — a nonprofit committed to raising awareness, support and resources for the siblings of disabled individuals. Now a public speaker, writer, and blogger who fights for both the special needs and minority communities, Jeniece has also founded JLQ Marketing, an organization that focuses on helping non-profits grow. She created this company along with her loving husband, Thomas Dortch III (and they were recently married, so send them some extra celebratory love!). Jeniece and Thomas continue this mission to give underserved communities and organizations a voice. Tune in as Jeniece shares: that she knew her son, Christian, had a seizure disorder around age 2, when he had a grand mal that it took more than one doctor to diagnose Christian — and Jeniece was empowered to seek second opinions because her mother is an anesthetist, an “insider” in the medical industry that Christian was diagnosed on the autism spectrum at the age of 3 that Christian is largely non-verbal, but clearly engaged with the world around him why she founded Special Needs Siblings the role of caregiving and the importance of support for siblings and parents of individuals living with disabilities and/or special needs how she’s tackling home school during the pandemic — with 6 kids at home! experiences of discrimination she’s faced in medical and community settings, and how she’s had to stand up for Christian’s needs against pushback what makes a good medical provider what’s next for Special Needs Siblings and for Christian’s care
November 25, 2020

103: Advocating Like A Mother: Kelly Cervantes on Life After Epilepsy

In May 2016, Kelly Cervantes and her family received two life-changing pieces of news: her husband, Miguel, had landed the starring role of Alexander Hamilton in Hamilton: An American Musical in Chicago; and their then-7-months-old baby girl, Adelaide, was diagnosed with epilepsy — and eventually, infantile spasms — a severe form of childhood epilepsy. She transitioned from being the family’s primary bread-winner to a stay-at-home mom and full-time caregiver. Eventually, she found her voice and purpose with the non-profit Citizens United for Research in Epilepsy (CURE), where she is currently a board member. The family hoped that science would catch up to their daughter…but that was not meant to be. Adelaide passed away due to complications of an as-yet-still-unidentified neuro-degenerative disorder…5 days shy of her 4th birthday, and just weeks before Kelly was to receive a WEGO Health Award for her contributions to patient advocacy blogging for Inchstones. In a demonstration of incredible resilience, Kelly made a public promise to her daughter: even though Adelaide’s battle was over, she would continue to fight for families affected by medically-complex disorders. By organizing fundraising campaigns, speaking at epilepsy events across the country, continuing her writing, and hosting CURE’s podcast Seizing Life, she makes sure Adelaide’s struggles were not in vain, and keeps hope alive for all the Adelaides to come. Her hope is that in publicly sharing her family’s journey with epilepsy and the real-life moments that come with parenting and grieving a special needs child, other parents in similar situations will learn they are not alone. Tune in as Kelly shares: how Adelaide was initially diagnosed as an infant that Adelaide’s longest stretch seizure-free was three months long that in 30% of epilepsy patients, seizures are intractable despite intervention that 1 in 26 people will be diagnosed with epilepsy in their lifetime that while certain types of epilepsy can be rare, epilepsy itself is not that there is a lot of stigma attached to the diagnosis — especially for adults why NOT to call an ambulance when you see someone having a seizure that epilepsy is always a symptom of something else: from TBI (traumatic brain injury) to genetics the need for more funding in epilepsy research how she acted as an advocate for her daughter how she learned to speak medical jargon to be taken more seriously by Adelaide’s doctors the importance of mental health support in the grief journey that Adelaide also had MCAS (mast cell activation syndrome) alongside her epilepsy — and her epileptologists often saw these comorbidities occur together why research gives her hope the importance of documenting seizures with video
November 18, 2020

102: Angels of Epilepsy Founder Natalie Y. Beavers

Natalie Y. Beavers is an award-winning epilepsy survivor, advocate, and founder of the Angels Of Epilepsy Foundation, a non-profit organization that brings awareness, education, and community to epilepsy survivors and their families nationwide. Diagnosed with epilepsy at the age of 5, a seizure while she was driving in 2006 caused a life-changing and tragic car accident. Subsequently, doctors informed her that there was damaged tissue on her left temporal lobe and a cyst on her brain. While two craniotomies have decreased her seizure activity, the cyst remains — so she still experiences seizures from time to time. Her many hospitalizations introduced Natalie to fellow epilepsy survivors and their families, and in 2008 she launched Angels of Epilepsy as a response to the community — to provide deeper support networks and fulfill needs from transportation to medical IDs, among others. Because of her disorder, Natalie continues to experience short-term memory loss — a common side-effect of epilepsy. In a doctor’s appointment in 2013, she couldn’t recall details of recent seizures…so she decided to create and publish The Seizure Diary, which aids those experiencing seizures in tracking their episodes and being able to report back to medical professionals with greater detail and accuracy. Most recently, she has also co-authored Hacking Healthcare with Lauren. What started as a guide to the US healthcare system for the Black community has now become a project with much wider range and significance; an ever-evolving document to provide support and resources to anyone relying on healthcare and finding themselves all at sea. Tune in as Natalie shares: how she was first diagnosed with epilepsy that she’s had periods of seizure inactivity that have enabled her to go off medication that by the age of 28, damaged tissue on her left temporal lobe had expanded — and a surgical implant was suggested in order to remove the tissue safely that the cyst on her brain has never been removed, because its removal could paralyze her that surgery really helped control her seizures, and reduced their severity and occurrence by about 80% how her family has provided her with emotional and practical support why she is a cannabis advocate that meditation has been an effective coping mechanism to control seizure activity when and how she reveals her condition to dates, employers, and the like why she founded Angels of Epilepsy
November 18, 2020

101: Breast Cancer Survivor Vatesha Bouler

An educator for over 20 years, Vatesha Bouler is a kindergarten teacher and (almost!) six-year breast cancer survivor. Diagnosed at a relatively young age, her experience pushed her to believe that life must be lived to the fullest — and she walks that walk every day in her advocacy work for others enduring similar experiences. A public speaker and author, she is one of the writers of Beyond Her Reflection, wherein she shares her healthcare story. A woman of faith, she also serves on the Cancer Support Ministry at her church, and has found continued love and support not only in her religious community, but also among friends and family who rallied to assist her in her healing. She recently launched the podcast Tesha’s Tea Room, where she interviews prominent survivors and practitioners in the breast cancer community about life during and after diagnosis. Tune in as Vatesha shares: that she was diagnosed with stage 2B breast cancer at 36 that she was referred to a fertility clinic to freeze her eggs before treatment started that she had a lumpectomy because she was negative for the BRCA gene; additionally, she endured chemo and radiation that the most devastating result of her chemo was the loss of her hair that her 6th anniversary is on 11/29 this year how strong she feels having defeated cancer that she will be living with the fear or recurrence for the rest of her life how she’s organized her present and future lifestyle around ongoing prevention the importance of mental health support for life-changing diagnosis and treatment why her health isn’t hers alone — it belongs to a community the importance of Black female voices in breast cancer care why it’s vital we know our family health history
November 11, 2020

100: SkinTē Founder Bassmina Mroue Talks Endo & Chronic Pain

Bassima Mroue is a Lebanese-American entrepreneur with over a decade’s worth of experience working with heavyweights like Nike and Spanx. As a board member of the Sara Blakely Foundation, she is an active supporter of female empowerment — as she so beautifully demonstrates in her 2012 TEDx Portland talk. Passionate for developing purpose-driven brands, inspiring women, and destigmatizing self-care, Bassima calls upon her diverse professional experience to revolutionize the way we approach beauty and wellness from the inside out…because, as she can attest, the revolution begins WITHIN. Diagnosed with endometriosis and living with chronic back pain and finding herself at odds with traditional healing methods, she turned to naturopathy…where her doctor (and now fellow co-founder) suggested she try ingesting collagen for gut healing and pain management. Bassima struggled to find a tasty way to do so…but also found this approach to be life-changing. And so, SkinTē was born: a “perfectionist formula made with collagen peptides, real brewed tea, super herbs, and fizz.” Ya know…a fun way to get your collagen, day-to-day. Tune in as Bassima shares: that she was diagnosed with stage 4 endometriosis and chronic back pain that she was told for 2 years that her pain was all in her head that she had endometriosis excision surgery — and it was a 5-hour procedure that stress and lifestyle really contributed to her back pain that working with one of her SkinTē co-founders, Dr. Amy Bader, to get on an anti-inflammatory diet helped alleviate numerous symptoms — but she still required surgery how she’s optimized her work-life with her health at the forefront of her mind her experience with pain suppression — and how it took a doctor to advise her to speak up sooner: “Do not wait for the knife to hit your bone” how she has operated in corporate environments to liberate her own story of pain and hormonal imbalance how her illnesses — and Dr. Bader’s patients — inspired them to partner with chef Elizabeth Zieg in creating SkinTē to make collagen ingestion more enjoyable how collagen has aided in her healing — especially her joints and gut (and the data behind collagen ingestion) the importance of functional medicine, and how she has accessed it through Parsley Health how she has learned to see food as medicine
November 4, 2020

Uninvisible Pod

Uninvisible Pod is 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 depression, anxiety, 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.
View All Episodes

Host

Lauren Freedman

Lauren Freedman

Lauren Freedman is a voice actor, writer, and activist who lives in Los Angeles. Originally from NYC, she has lived with depression and anxiety since she was a teen, and was first diagnosed with Hashimoto’s disease and sleep disorders in 2017. This sparked her interest in the invisible illness community and her fellow “Spoonies”, with whom she wishes to commune and share information, inspiration, and comfort while advocating for greater awareness. Lauren graduated from London’s Royal Academy of Dramatic Art with a BA (Hons) in Acting in 2008. She’s a longtime student of the School of Hard Knocks and What’s-A-Matta-U. Fall down seven times, stand up eight.

You may also like

The Best Health Podcasts. Delivered to Your Inbox.

Proudly supported by:

cover
Caring for Patients with Cultural Humility: Monica Gandhi, MD, MPH, San Francisco Co-Chair, AIDS Conference 2020 Physicians treating patients from marginalized communities must practice cultural humility.