rare disease

Avery’s Acromegaly: “It’s All in Your Head”… but Something Is Actually in My Head!

Avery was gearing up for senior year of college when she began to notice painful changes in her body. Her initial symptoms included difficulty sleeping and intense jaw pain. Avery also began to notice growth in her facial features, hands and feet. She thought these changes could be from another Read more…

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By Major Pain Podcast, ago

Living with Collagenous Gastritis

Ezra lives with collagenous gastritis (CG), one of the rarest conditions we’ve ever covered on the Major Pain podcast. Collagenous gastritis is characterized by a buildup of collagen in the digestive tract, which causes bumps or nodules to form. The most common symptoms are abdominal pain and anemia. Ezra has Read more…

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By Major Pain Podcast, ago

Season 3 Premiere! Catching Up With Previous Guests

This week we kick off the third season of Major Pain by catching up with previous guests! First we’ll check in with Andrew, who originally appeared in December 2021 to discuss mild traumatic brain injury (MTBI). He has been slowly improving since then, feeling as if a new self is Read more…

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By Major Pain Podcast, ago

Pancreatitis, Small Fiber Neuropathy, MCAS, Sjogren’s and More: Jo’s Health Journey So Far

In 2017, Jo began experiencing intense pain under her rib cage that traveled to her back, as if she was being impaled. She had complained of various pains throughout her life that doctors always brushed off, so at first she had no desire to seek professional help. But after two Read more…

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By Major Pain Podcast, ago

Living with Hidradenitis Suppurativa

Joey Torre lives with hidradenitis suppurativa (HS), a painful, chronic skin condition that affects up to 2% of the population. The disease causes the formation of bumps, lesions, or boils in sweat gland areas, such as the armpits and groin. Joey also experiences extreme fatigue, which can sometimes accompany HS, Read more…

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By Major Pain Podcast, ago

After Cavernous Malformation Surgery on Her Brain, Christina Developed Hypertrophic Olivary Degeneration

When Christina turned 40 she suddenly started having migraines every day. She was going to work as an accountant dealing with spreadsheets and math, while splitting headaches turned each day into relentless agony. After a month of this pain she finally went to see her doctor, who ordered an MRI. Read more…

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By Major Pain Podcast, ago

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, ago

Stacy’s Chronic Illness Duo: Hashimoto’s Thyroiditis and Endometriosis

Stacy has been diagnosed with two chronic illnesses, but getting those diagnoses was an uphill battle. In 2019 she started experiencing extreme exhaustion, brain fog and weight fluctuations, but repeated visits to multiple doctors revealed nothing. In her tenacity to uncover the truth she started researching potential tests to request, Read more…

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By Major Pain Podcast, ago

Living with POTS, HEDS, Rapid Gastric Emptying and More

Katherine has been chronically ill her whole life, but didn’t realize it until the situation became debilitating in college. She was always a flexible kid, able to twist, contort and bend in all sorts of unusual ways. In high school she started experiencing chest pain and heart palpitations, but was Read more…

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By Major Pain Podcast, ago

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…

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By Major Pain Podcast, ago