chronic Archives

Major Pain Podcast Episodes

Her Laundry List of Diagnoses Inspired a Children’s Book About Autoimmune Disease

Heather has accumulated an overwhelming number of medical diagnoses, including Sjogren’s disease, vasculitis, SLE lupus, new daily persistent headache disorder, small intestine bacterial overgrowth (SIBO) and endometriosis. At 20 years old her boyfriend (who is now her husband) sat her down to say she was sick and needed to go Read more…

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By Major Pain Podcast, 1 yearNovember 16, 2022 ago

Major Pain Podcast Episodes

Simon’s Silver Bullet for Chronic Fatigue Syndrome

In 2012 Simon was dating a lovely young woman who happened to have mono. She warned Simon against kissing her as she might be contagious, but he threw caution to the wind assuming catching mono would only be a temporary setback. Indeed he did get sick with mono, and was Read more…

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By Major Pain Podcast, 1 yearNovember 9, 2022 ago

Major Pain Podcast Episodes

Living with Multi-Generational Ehlers-Danlos Syndrome

Kenneth’s family has a multi-generational history with Ehlers-Danlos syndrome (EDS). Family members with the disease include his mother, uncle, grandmother and great grandmother. Kenneth was diagnosed at just 2 years old while being examined for a knee injury. A trauma caused massive swelling in his knee, producing a hematoma the Read more…

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By Major Pain Podcast, 1 yearNovember 2, 2022 ago

Major Pain Podcast Episodes

A Diagnosis from Every Category: Ankylosing Spondylitis, Vestibular Migraines, Bipolar Disorder and More

Kevin has been on a diagnostic roller coaster over the past few years. He was working in a management position at a museum when he started having trouble walking, difficulty straightening up and intense pain in his feet. He also developed uveitis in his eyes, a painful inflammatory condition that Read more…

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By Major Pain Podcast, 1 yearOctober 26, 2022 ago

Major Pain Podcast Episodes

Pauline’s Quest for an MCAS Diagnosis

Everybody has mast cells in their body, as they play a critical role in allergic response. Mast cells release mediators to attack allergens, but can sometimes overreact when no allergen is present. This is the case for Pauline, who was recently diagnosed with mast cell activation syndrome (MCAS). Though her Read more…

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By Major Pain Podcast, 2 yearsOctober 19, 2022 ago

Major Pain Podcast Episodes

Living with Type 1 Gaucher Disease

Adrianna was born with type 1 Gaucher Disease, a genetic condition in which an enzyme is missing from the body. This leads to a build up of fatty cells that can cause damage throughout the body. For Adrianna, this has led to intense bone pain, low platelet count, anemia, extreme Read more…

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By Major Pain Podcast, 2 yearsOctober 5, 2022 ago

Major Pain Podcast Episodes

Living with Stickler Syndrome, RLS, Blindness and More

Lily is a grad student researching human development and culture, focusing on how cultural mindsets around disability impact infrastructure. She was born with a rare connective tissue disease called Stickler Syndrome, which is likely the root cause of a constellation of health challenges she has faced throughout life. In second Read more…

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By Major Pain Podcast, 2 yearsSeptember 21, 2022 ago

Major Pain Podcast Episodes

Level 10 Pain, the Mayo Clinic, Aphasia and Sarcoidosis: Claudia’s Journey So Far

Claudia Alick is an activist and influencer with a transmedia social justice practice, creating spaces for entertainment, education and empowerment by and for marginalized communities. While working as a disability advocate in 2009, Claudia found themself suddenly experiencing what they describe as mysterious level 10 pain, accompanied by mobility issues Read more…

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By Major Pain Podcast, 2 yearsSeptember 14, 2022 ago

Major Pain Podcast Episodes

Living with Hyperhidrosis, the Excessive Sweating Disease

Kristen lives with a rarely talked about disease called hyperhidrosis, which causes excessive sweating from the moment she wakes up to the moment she goes to bed. This includes the usual spots people sweat such as under arms or the low back, but also places you wouldn’t expect such as Read more…

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By Major Pain Podcast, 2 yearsSeptember 7, 2022 ago

Major Pain Podcast Episodes

Fiction Writer Emma G. Rose Incorporates Chronic Illness Experience in New Novel

In her new novel On the Bank of Oblivion, author Emma G. Rose explores her own history with chronic illness through the lens of contemporary fantasy. At 16 Emma was diagnosed with chronic fatigue syndrome (CFS), now referred to as myalgic encephalomyelitis (ME). It all started with a tickle in Read more…

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By Major Pain Podcast, 2 yearsAugust 31, 2022 ago