Uninvisible Pod with Lauren Freedman

Uninvisible Pod with Lauren Freedman

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.... Show More

Episodes

October 28, 2020 92 min

When she first met her new gynecologist, Lauren R. Kornegay was introduced to a disorder that was unfamiliar to her at the time: endometriosis. Diagnosed at the age of 20, she experienced the pain, struggles, exhaustion, and confusion that accompany the disease. This led her on a search to find someone who looked like her — who was also living with the same diagnosis. Each time, she came up empty-handed. Due to a lack of representa...

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Nkem Osian is a Public Health Analyst at the United States Department of Health and Human Services, where she analyzes and monitors Ryan White HIV/AIDS Programs in Los Angeles County. In this role, she ensures the uninsured, underinsured, and vulnerable individuals with HIV have access to optimal, life-saving treatment and care. In addition, Nkem is a patient advocate and member of the board of The White Dress Project (WDP), an org...

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Jahlove Serrano is a health educator, youth advocate, HIV/AIDS activist, androgynous model/runway coach, drag Queen, background dancer, and choreographer to the stars. He's a Guatemalan/American native of the Bronx, New York, and contracted HIV a couple of days shy of his 16th birthday. Upon diagnosis — and as he learned more about the experiences that led to diagnosis — he decided to take a leadership role in his community wit...

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Giuliani Alvarenga is an award-winning writer and law student living in New Orleans. A familiar face to those who have watched Trust Me, I’m Sick, they are HIV-undetectable and have a Bachelor's degree in English Literature and Gender & Women's Studies from the University of California, Berkeley. Giuli is also affiliated with the Centers for Disease Control (CDC), and a student liaison for the American Bar Association&#...

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Charles Sanchez is a Mexican-American, gay, HIV+ writer, performer, director and advocate living in New York City. He is one of the co-founders of Skipping Boyz Productions, and conceived, writes and stars in the award-winning musical comedy web series Merce. In 2003, he was diagnosed with AIDS and began his journey to becoming an activist and advocate. He has attended the national AIDSWatch conference in Washington D.C. four t...

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September 23, 2020 33 min

A native of Nigeria, Ade Adeyokunnu emigrated with his family as a child and grew up in Maryland. Currently living in the Philadelphia area (and a newlywed!), he’s been passionate about sickle cell disease advocacy for as long as he can remember — perhaps because both he and his younger sister, Bukky, both live with the diagnosis. It’s what drove him to create SikCell, the first online community for people living with sickle cell d...

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Bukky Adeyokunnu is a self-taught portrait photographer and filmmaker. Born in Lagos, Nigeria and bred in Prince George’s County, Maryland, Bukky tells visual stories of women, health, and the immigrant experience. She began her journey in 2015 and has since become a Dean’s Collection artist, been featured in xoNecole for The Warrior Series, a photo series which captures how three strong women triumph over sickle cell disease, and ...

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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, thank...

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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-Co...

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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...

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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 n...

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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 g...

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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 c...

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August 5, 2020 60 min

@Autism_IRL is an Instagram account created by WEGO-award-winner Dana Kelsey, who works alongside her parents as a full-time caregiver for her autistic adult brother, Robert. Dana has a background as a behavior analyst, and has been working professionally with the autistic community for 10 years. Her passion for this line of work was sparked by a personal tragedy involving Robert’s mistreatment. In 2017, Dana made the decision ...

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Daniel Jones is the founder of The Aspie World (TAW), an internationally-recognized patient leadership platform that works to help the world understand autism — from an autistic person’s perspective. It has become the UK’s #1 resource for Asperger’s syndrome, ADHD, OCD, and dyslexia. With a YouTube audience of over 100k and over 8 million views, Dan has become an influencer and public speaker — and a leading voice in the autism com...

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Jennifer White-Johnson is a designer, photographer, art activist, and art educator. Her work focuses on the intersection of content and caregiving with an emphasis on redesigning ableist visual culture. In this interview, Jen shares her experience living with Graves’ disease and undiagnosed ADHD, as well as her son’s diagnosis of autism at age 2. When Knox was diagnosed on the spectrum, Jen began to examine the absence of Black dis...

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Tanika Gray Valbrun is an award-winning journalist and women’s health educator. She is the founder of non-profit The White Dress Project, an organization dedicated to bringing awareness, raising funding, and increasing education about uterine fibroids. Tanika lives with uterine fibroids herself, one of the 80% of Black women in the US to develop them. As the founder of The White Dress Project, Tanika has successfully worked with do...

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Lisa Sniderman, aka Aoede, is an award-winning quirky folk-pop musician, playwright, author, and filmmaker from San Francisco. She’s been honored with more than 85 awards for songwriting, audiobooks, films, stage plays, and books since 2012 — all while living from rare autoimmune disorder dermatomyositis (or DM, as she calls it), a progressive muscle weakness disease. Her memoir, A Light in the Darkness: Transcending Chronic Illnes...

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Trust Me I’m Sick is a docu-series produced in partnership with nonprofit Suffering the Silence that explores how chronic illness affects the everyday lives of five people living in Los Angeles, California. Ezra (18), Giuliani (29), Henriette (50), Matt (32), and Cassandra (28) share intimate stories about how lupus, HIV, and other conditions shape their relationships, careers and visions for the future. In this episode, Lauren sit...

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Sheryl Chan is the writer behind A Chronic Voice, a blog that aims to articulate lifelong illnesses through various perspectives. She herself lives with multiple diagnoses, which include autoimmune disorder antiphospholipid syndrome, Sjögren's syndrome, epilepsy, lupus (SLE) and more. Beginning with a mini stroke at the age of 14, Sheryl’s experience was followed by multiple blood clots in the lungs and legs, a gore-tex band fo...

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