Stacey is seemingly living the dream. Working as a social media manager and patient advocate for Rare Patient Voice, she balances work with being a wife, mother, dog mom, caregiver, and pursuing her goal of a happy healthy home on the islands of Hawaii. For most people the normal struggles Read more
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For Kindra, it’s been a 17 year journey to figure out why she is chronically ill. Her symptoms started around 14 years old, and include not just widespread chronic pain, but also severe fatigue and brain fog. Although the pain is difficult, the fatigue has the most detrimental effect on Read more
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MaKenzie has received a slew of chronic pain and chronic illness diagnoses over the years, including Chiari malformation, lupus, Sjogren’s disease and Hashimoto’s syndrome, but she isn’t focused on her diagnoses. She’s focused on managing the daily impact of her symptoms and the emotional toll this journey has taken. She Read more
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Juvenile rheumatoid arthritis refers to an onset of autoimmune arthritis at a young age, which happened to Andrea when she was just 10 years old. She had been experiencing severe TMJ, wrist and knee pain, but doctors did not realize she had juvenile RA throughout her childhood. She was finally Read more
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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
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According to the National Library of Medicine, about 25 percent of patients with an autoimmune disease will develop additional autoimmune diseases. That is definitely true of this week’s podcast guest, Vicky. Her first diagnosis of autoimmune rheumatoid arthritis came during high school, and she was diagnosed with Sjogren’s syndrome a Read more
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Throughout his life, Douglas had been plagued by random episodes of fever, but they usually passed on their own and he was able to mostly ignore them. That all changed in his late 20s, when a particularly horrible fever took him to the emergency room. Doctors discovered an infection from Read more
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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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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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Between sophomore and junior year of college, Cheryl’s world turned upside down as she began to feel mysteriously unwell. She started losing weight at a frightening rate, getting down to 105 pounds. Her doctors refused to believe that she was ill, going so far as to call Cheryl’s parents and Read more
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