Uninvisible Pod

Uninvisible Pod

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

Latest From Series

092: Stem Cell Transplant Recipient Revée Agyepong is Sickle-Cell-Free

Revée Agyepong is a registered nurse specializing in neonatal intensive care and based in Edmonton, Alberta, Canada. She currently works in the Pediatric Hematology Clinic at the Stollery Children’s Hospital as the Sickle Cell Disease Nurse…which is fitting, considering that until recently, she was living with sickle cell disease herself. In late 2017, she received an allogenic stem cell transplant to cure sickle cell anemia, thanks to her sister’s bone marrow donation. After 25 years of hospital admissions and countless treatments, Revée made history as the first adult in Alberta to receive this disease-reversing — and life-changing — treatment. A member of the Not Just You Sickle Cell Transplant Alliance for Research and the Canadian Hemoglobinopathy Nurses Group, Revée is passionate about inspiring, encouraging, supporting, and advocating for the sickle cell community. Come along with her on this beautiful story of perseverance, determination, and faith…and help us congratulate Revée as she has just launched her new business venture, inspired by her health experience…a natural home, hair, and skincare line called Rêve Naturals, designed to help others reduce toxins in their day-to-day! Tune in as Revée shares: what it was like growing up with sickle cell how growing up with chronic illness tested her faith how her treatments developed over time before her remission how her health experiences drew her into a career in medicine how she became the first adult in Alberta to undergo a stem cell transplant to cure sickle cell that her sister was a perfect bone marrow match, and donated for her stem cell treatment that she’s gone from sickle cell patient to transplant patient that she’s officially sickle-cell-free — and that this strangely sent her into a kind of identity crisis that as a transplant patient, she doesn’t fit into the “traditional” model of aftercare support that for her, transplant was a choice — but for most recipients, transplant is the only option how her sister’s advocacy played a role in inspiring her to be a patient advocate how she became expert at playing down her own pain
September 16, 2020

091: Sabrina Marie Vera on Life w/ Rare Blood Disorder HHT

Sabrina Marie Vera is a proud first-generation college graduate, Puerto Rican woman, and HHT survivor. She and her family suffer from Hereditary Hemorrhagic Telangiectasia (HHT), a rare genetic blood disease that took brother Robert’s life 15 years ago. HHT affects about 1.4 million people worldwide and has no cure. Sabrina graduated from Pomona College with a B.A. in Politics as a proud Gates Millennium, Chicago Posse, and Coca-Cola scholar. For her senior project “How the Marginalized Mobilize,” Sabrina explored the political theory underpinnings of activism in three distinct communities that all relate to her identity. She looked at disability rights activism in reunified Germany, digital queer activism in the MENA region post-Arab Spring, and the radical, anti-colonial activism of Puerto Rican Americans in the late 1960s. Sabrina, along with her mother, is the co-founder of the social change initiative and online platform Living with HHT, which connects over 2,000 patients worldwide suffering from HHT from all over the world, from New Zealand to India. Sabrina plans on going to law school after her gap years as a Global Writing and Speaking Fellow at NYU Shanghai. Her goal is to be a lifelong advocate for people with rare and chronic diseases both in and out of the courtroom. Tune in as Sabrina shares: that HHT is genetic, and runs in her family that HHT causes the development of AVMs (arteriovenous malformations, which cause a tangle of blood vessels that disrupt normal blood flow), which require surgery to repair that HHT can seemingly affect anybody, regardless of race or gender; 90% of HHT patients also remain undiagnosed how race and gender have affected her experiences in the healthcare system that in the past, she has been rendered invisible, and not believed (in the healthcare system) that about 50% of HHT patients experience a chest pain called pleurisy — and not enough research has been done to prove whether or not pleurisy is caused by AVMs, repair coils, or HHT itself that she has a cerebral AVM, and her brother died from a stroke and seizures caused by one the problems with mental health support in the US healthcare system, particularly for those who are living with comorbid chronic conditions how important it is for her to bring her culture and her pride to any table at which she sits why claiming her sexuality is so important to her — and that for women, sexuality and success are NOT mutually exclusive
September 9, 2020

090: Amanda DeJesus is the Chef With A Heart (Transplant)

Amanda DeJesus was the recipient of a heart transplant at the age of 15. Inspired by her need to eat heart-healthy, she developed a passion for cooking and trained as a chef, graduating from the Art Institute of Houston in Texas. With her friend and stroke survivor Kelly Fucheck, she is co-host of the podcast Unfiltered Survivors. In 2017, Amanda served as a spokeswomen for the American Heart Association’s Go Red for Women campaign; she continues to volunteer with the AHA, and is also affiliated with Donate Life America and Lyfebulb. As a chef, she continues to serve clients seeking to find heart-healthy alternatives to their favorite dishes, assisting patients who are undergoing lifestyle changes and providing support and education — from shopping to cooking lessons. She is currently on the list for a second heart and kidney transplant, so tune in and join us in wishing her luck! Tune in as Amanda shares: that Amanda’s sister was also born with a heart defect — which was repaired when she was a baby that Amanda had her first open-heart surgery at 7 days old that at 12 years old, her doctors discovered she had dilated cardiomyopathy — and gave her a pacemaker that her heart was failing by age 13, and she had her transplant at 15 that most heart transplants last a decade — and Amanda’s has now lasted well beyond expectation that she needs a kidney transplant along with her heart — and the kidney transplant is necessary because of long-term use of anti-rejection drugs that she’s currently doing dialysis 3 days a week that heart attacks have traditionally been regarded as a “white man’s disease” — and that only recently has research shown symptoms to present differently in women her experiences of discrimination in the medical system that the privatization of healthcare has threatened her family’s stability on numerous occasions the importance of bridging the gap between pediatric and adult healthcare that she lost friends who were lost in the system during the transition to adult care the problems with the US healthcare system, and how it’s linked so closely to education and access to healthy food how understanding her own mortality has made her bold and live life without regrets the importance of mental health support when living with chronic illness how joining her community and speaking about her struggles has given her strength that she’s had to learn that spontaneity is OK
September 2, 2020

089: Liver Transplant, Purpose, & Activism w/ Journalist Kendall Ciesemier

Kendall Ciesemier is the executive producer of multimedia for the ACLU. A multi-award-winning reporter, producer, writer, and social entrepreneur, she founded Kids Caring 4 Kids — an organization that empowers young people and helps provide access to clean water, healthcare, food, and education to children living in Zambia, Kenya, and South Africa — at the age of 11. While attending Georgetown University, she co-founded OWN IT, a national women’s initiative that empowers and inspires college-age women by providing access to 21st-century female leaders through summits focused on said leadership, diversity, accessibility, and feminism. Kendall came to prominence as a journalist through her work with digital news company Mic. Her interview with Alice Marie Johnson, a woman serving life in prison without parole for a first-time nonviolent drug offense, caught Kim Kardashian West’s eye. Kardashian West then successfully lobbied President Trump to grant Johnson clemency — and Kendall produced a series of reported pieces alongside the effort, catapulting the story to make international headlines and result in real-world impact. She has also worked at The New York Times and CBS This Morning, and is the co-host of podcast That That Don’t Kill Me. Most prominently, she has been honored as the 2014 Glamour Magazine College Woman of the Year, a Chicagoan of the Year by Chicago Magazine, Zeitgeist Young Mind by Google, and one of Youth Service America’s Top 25 Most Powerful and Influential Young People. She’s given a TED Talk, rubbed shoulders with Hoda Kotb and Kathie Lee Gifford on the TODAY, Show, and even been sandwiched between President Clinton and Oprah on her eponymous show. All this…and she’s also survived two liver transplants. Here, we turn the mic toward Kendall to hear her story: how she was diagnosed with chronic liver disease as a child, the organ donation process, and how she maintains her health to this day. Her story is one of triumph against the odds — and she knows it. Tune in to learn more about this incredible woman! Tune in as Kendall shares: that she was diagnosed with pediatric liver disease biliary atresia at 8 weeks old — and had her first surgery at that age, as well that she had her second surgery at 4 years old — and a grand total of 6 major liver surgeries, to date that she had 2 liver transplants at 11 years old — the first a living donor (her Dad), the second a deceased donor how liver transplant works that she’s coming up on 16 years post-transplant that her abdominal muscles are also flipped — a condition called abdominal situs inversus that as a result of a surgical complication from her second transplant, her bile ducts narrowed and collapsed — and she had to have a tube inserted to drain her liver in order to avoid sepsis. The tube was changed out every 6 weeks under general anesthesia, from the ages of 11-23 that when she had an aneurysm of one of her arteries, she narrowly survived — there was only a 2% chance of survival that she’s achieved so much because when you face your biggest fear at all times (mortality) — it instills a boldness in you — and she sees that as a huge advantage in life that Kids Caring 4 Kids gave her tremendous purpose while undergoing transplants when she was young — and supported her healing why it’s so important to fight for disability accommodations in college and beyond that medicine is an art, not a science — and still involves a lot of guesstimation. That’s why you should trust yourself above all others
August 26, 2020

088: Mental Health Care, Grief, & Accessibility w/ Tori S. Dixon, MS LPC

Tori S. Dixon (MS, LPC) is the owner and practicing clinician of Graceful Journey Counseling in Arlington, Texas. A licensed professional counselor with a background in funeral direction, her specialty has naturally become grief and loss; she practices from the belief that any barrier to mental wellness is ultimately attributed to some sense of loss. Whatever the loss, she believes that grace and space to acknowledge and properly grieve loss is the first step on the road to true healing and emotional and mental wholeness. Tori adopted a theoretically-sound, culturally-competent and faith-based approach that focuses on engaging and meeting clients where they are on their journeys. Her goal is to provide the safe space her clients need to grow fully into who they were created to be — and to thrive in life and relationships. In this episode, we discuss mental health care from a chronic illness perspective; we also address the need for culturally-competent care, and for access to mental health care as an imperative. Tune in as Tori shares: that she has worked with past guest Dr. Jessica Shepherd for the last 2 years, helping clients manage mental and physical wellness that sometimes her work is about bridging the gap between patient and clinician that she specializes in grief and loss because she worked as a licensed mortician for 14 years that she sees grief and loss not only as the loss of a loved one — but also as losses related to relationships, jobs, home, finance, health, etc. the importance of cultural sensitivity and competency in mental health counseling: that often, patients want to talk to clinicians who can understand their experiences that she often comes across clients who have not been believed, had requests denied, or felt they were not heard by other clinicians that her role is to empower and validate her clients — to acknowledge that their experience is real, and not imagined a discussion of the social factors that impact mental health and wellness that so much of medical research has been created out of bias — and it’s time to reinvent mental health service infrastructure to support the Black community, among others that race, gender, and other inequities in healthcare are a public health crisis of the scale of COVID-19 — or greater why she works on a sliding scale with her clients why she coaches clients to cultivate life-work balance, rather than work-life balance why consistency is key to creating real, lasting change why you are one decision away from changing your life that it is your right to be healthy in mind and body why everybody needs a therapist
August 19, 2020

087: Advocating for Youth Mental Health w/ Letters To Strangers’ Diana Chao

TW: This episode includes mention of suicidal ideation and behavior, as well as discussion of a suicide attempt that the guest survived. Diana Chao is a 21-year-old first-generation Chinese-American immigrant from southern California. During her sophomore year of high school, bipolar disorder nearly ended her life…and inspired her to create non-profit Letters To Strangers (L2S), which uses the healing power of the written word to create awareness of mental health and illness, and spread comfort as “humanity distilled into ink”. Today, L2S is the largest global youth-for-youth mental health nonprofit, impacting over 35,000 people on six continents. For this effort, Diana has been named Oprah Magazine's 2019 Health Hero, the youngest winner of the Unilever Young Entrepreneurs Award, and the only American winner of the 2019 Global Changemakers cohort. As part of Adobe's inaugural class of global Top Talents, Diana seeks to further the intersection of creativity and social impact through conceptual photography. Her Minority Mental Health Month self-portrait series went viral with 2+ million views, and she gives workshops and speeches on youth mental health.  She’s also a 2020 recipient of the Diana Award, named for Princess Diana and honoring youth changing the world. But most of the time, she is a third-year at Princeton University trying to wake up for class on time. And, as you will soon learn: an absolute delight.   Tune in as Diana shares: that she was diagnosed with bipolar disorder at the age of 13 that she struggled to validate both her disorder and diagnosis how culture — and the immigrant experience — has played into her experience of mental health support and awareness that she has also been diagnosed with autoimmune eye disease anterior uveitis, which causes temporary blindness that anterior uveitis was her way in to increased medical care, and gave her access to a psychiatrist — which played a huge role in her access to ongoing mental health care that her brother found her during her last suicide attempt, and her honor and love of him helped shift her perspective on her self-worth that writing and connecting has been healing for her — which is why she founded L2S that L2S started as a student club during her sophomore year at high school that L2S is as much about connecting the community as it is about changing access to and integration of mental health support services in schools around the world, destigmatizing conversations about mental health and illness that she’s been episode-free for the past 2 years that over 80% of mental health practitioners in the US identify as white — which causes difficulties in treating patients with diverse backgrounds who don’t necessarily feel fully understood that in the mental health DSM, culture-bound symptoms are mostly included only in the appendix that L2S is also creating inroads for young people of color to pursue careers in mental health care that — understandably — she got into a depression spiral during quarantine for COVID-19 why the basic concept of self-care comes from a place of privilege
August 12, 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.
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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.

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