Tyler Roope on Living with Spinal Muscular Atrophy (SMA)

Tyler Roope is a 25 year old TikTok star, who blends comedy and education while advocating on behalf of the disability community. He lives with spinal muscular atrophy (SMA) type 2, which severely limits his voluntary muscle movement. Tyler is considered a strong type 2 since he is able to Read more…

The Infuriating Contradictions of Undiagnosed Illness

Courtney refers to herself as a hot potato patient, being passed from specialist to specialist in search of a diagnosis to her mystery illness, but none of these providers have been willing to keep digging until an answer is found. She used to be an avid globe trotter while working Read more…

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…

Finally Diagnosed: Her Genetic Condition Hid in Plain Sight for Decades

When Ashley scheduled an interview for the Major Pain podcast to discuss her chronic illness, she was prepared to talk about living with an undiagnosed disease. But to her shock, just weeks before recording her interview, a rheumatologist officially confirmed a diagnosis. Ashley found herself looking back on her life Read more…

Fighting Medical Gaslighting while Living with Chronic Illness

Aimée has been experiencing chronic pain and increasingly debilitating neurological symptoms throughout her life. She was first diagnosed with fibromyalgia at just 12 years old, at a time when that diagnosis carried little to no actionable recourse and significant stigma. Due to a lack of helpful doctors in the face Read more…