disease

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

Living with Celiac Disease, Chronic Migraines, Covid Complications, Fibromyalgia and more

Kristin has lived with pain since she was 9 years old, a journey that has taken her through chronic migraines, celiac disease, covid complications and remaining medical mysteries. As a child she would experience tingling pain in her head, often accompanied by visual disturbances, nausea and vomiting. Shortly after these Read more…

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By Major Pain Podcast, ago

Chronic Illness Author and Advocate Ilana Jacqueline Shares Her Rare Disease Journey

As a chronically ill child, Ilana was repeatedly accused of faking her illness when seeking medical care. Doctors refused to dig deeper into why this particular child was consistently afflicted with bacterial infections and viruses that took abnormally long to heal, choosing instead to blame the parents or Ilana herself. Read more…

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By Major Pain Podcast, ago

The Link Between Childhood Abuse and Endometriosis: A Survivor’s Personal Account

Amanda grew up experiencing constant trauma. Her mother was deeply abusive, to the point that Amanda’s father was given custody at 6 years old. He moved the family to California and joined a religious cult, where Amanda would continue to suffer abuse with nowhere to turn. Having lived through emotional, Read more…

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By Major Pain Podcast, ago

Living with Two Invisible Conditions: Hypermobile Ehlers-Danlos (HEDS) and Autism

Brandy grew up knowing she was different. She struggled both socially and physically, having problems picking up social cues while constantly experiencing injuries and joint dislocations. When seeking help she was disbelieved, shrugged off, or accused of drug seeking behavior. Brandy tried to push through and be strong, but her Read more…

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By Major Pain Podcast, ago

Caitlin’s Chronic Illness Puzzle: POTS, Spondylolisthesis, Hypermobility, FND and More

Many children beg their parents for a pony, but Caitlin actually made that dream a reality. She wasn’t allowed to have a pony until proving she could afford one and look after it by herself, so as a teenager she bought one in secret, finally informing her parents 10 months Read more…

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By Major Pain Podcast, ago

Chronic Headache and Pineal Gland Cyst, Weighing the Decision to Operate

Misty is a 43 year old massage therapist and artist with a complex medical history. Multiple motor vehicle accidents triggered a cycle of chronic pain, including a trauma induced lipoma in their low back that had to be surgically removed. Even with constant sharp pain in their right temple, their Read more…

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By Major Pain Podcast, ago

Living with Refractory Epilepsy

Tiffany had her first seizure at 16 years old. She had gone to bed after studying for a history test, and woke up the next day on a gurney bound for the hospital. This first seizure caught her completely by surprise, and for years seemed to be some sort of Read more…

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By Major Pain Podcast, ago

Living with Adult Cerebral Palsy, Seeking a Clear Care Pathway

Growing up in the UK, Emma received care and services that helped her adapt to life with cerebral palsy. For some patients this disease affects cognition and neurology, but Emma was born with a less severe form causing mostly physical impairment. She was a bit clumsy and fell more often Read more…

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By Major Pain Podcast, ago

Living with a Mysterious Seizure Disorder

Emily has been having mysterious seizures since she was 8 or 9 years old. Her preliminary tests all came back normal, and none of the adults responsible for her care pushed any further for a diagnosis. Over time the seizures blended into her daily life, becoming a normal occurrence in Read more…

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By Major Pain Podcast, ago