Imagine performing without being able to see the edges of the stage, or worrying that your eyes could rupture before the show’s end. What sounds like a horrible nightmare was a reality for Sarah, a Seattle based actor living with keratoconus. This rare eye disease causes a bulging and thinning Read more…
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Shawna has been through more than most 29 year olds. She has diffuse scleroderma, also known as systemic sclerosis, a disease characterized by hardening of the skin and potentially life-threatening effects to internal organs. While this disease normally effects older individuals, Shawna started noticing symptoms at just 14 years old. Read more…
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This week we have a community focused episode with Jesse and Andi. First they share an email from listener Morgan, and discuss the ramifications of multiple misdiagnoses when searching for answers to a mystery disease. Then they dive into Jesse’s health update, including progress towards finding a diagnosis and the Read more…
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Many people with chronic pain, undiagnosed disease or invisible illness run into constant barriers when seeking medical care. Doctors often don’t take their symptoms seriously, or assume nothing is wrong when they can’t immediately pinpoint a cause. For people dealing with dynamic illness, understanding the medical system well enough to Read more…
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15 years after her multiple sclerosis diagnosis, Lauren has learned to live comfortably and happily with her disease. She now conceives of MS as a friendly neighbor, something that pops by and says hello from time to time without weighing upon her daily life. Reflecting back on her diagnosis at Read more…
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When Cammie and Evan’s two boys were 1 and 2 years old, Cammie was diagnosed with CREST disease. CREST, also known as limited scleroderma, is an intensely painful rheumatic condition with a wide variety of symptoms that progressively affect the entire body. Cammie was told if she did everything right Read more…
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Three years ago Andi Alhadeff was stricken with a sudden influx of intrusive thoughts, a condition often associated with OCD, along with extreme anxiety and nausea. Blood tests showed elevated prolactin, a hormone produced by the pituitary gland. Further testing revealed that Andi had a pituitary adenoma (or prolactinoma), a Read more…
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Justin Balch has lived many lives, having been derailed several times by chronic pain and health issues. While studying as a saxophone performer he developed a mystery pain that forced him to put down his instrument permanently. He adjusted course and became a professional audio engineer, until a barotrauma caused Read more…
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Like millions of other Americans, Mya suffers from a disabling undiagnosed disease. She experiences constant pain, brain fog, and requires a wheelchair to be mobile. But she is also a viral TikTok sensation, known for her joyous attitude, dance moves and social activism on behalf of the disabled community. In Read more…
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Charcot-Marie-Tooth (CMT) is a rare form of muscular dystrophy that causes damage to peripheral nerves. It manifests in a variety of ways depending on the individual, but generally causes degenerative muscle weakness and atrophy in the arms and legs. For Brandon Sullivan, it has manifested in having to walk painfully Read more…
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