Andi and Jesse are married! For their wedding registry they asked their community to donate to an Undiagnosed Disease Fund, with the goal of raising enough money to provide genetic testing for an individual in need. Full genome sequencing can be helpful for individuals with a mystery illness, either to Read more…
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Jennifer Weaver is the host of the My Spoonie Sisters podcast, and her history with chronic illness is a storied tale. While most people never have to worry about the 1% chance of side effects from medication, Jen is the person who will develop the rare reaction. That’s exactly how Read more…
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Dr. Melanie Hoppers never planned to become an expert on chronic fatigue syndrome (CFS). She learned about it briefly in medical school, but her professors largely brushed off the complaints of CFS patients. It wasn’t until her own daughter got sick that Dr. Hoppers began to research CFS, becoming desperate 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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Maureen has lived through huge health challenges, but her outlook is still one of gratitude. After the passing of her father she has lived every day like it is her last, remembering to laugh and live in the moment. This mindset has helped her navigate a slew of health challenges. Read more…
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Sunny did not consider her diagnosis as a major pain, but rather a “major inconvenience,” until she realized how affected her daily life was. Since childhood, Sunny battled to stay awake during the day. She experienced sudden waves of drowsiness and her eyelids feeling heavy, which often would not resolve Read more…
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Sydney Anne Bennett lives with functional neurological disorder (FND), which is a condition where the brain doesn’t communicate properly with the nervous system. Sydney’s symptoms include chronic pain, hallucinations, loss of taste, trouble sleeping, hand paralysis, seizures, ataxia, muscle spasms, fatigue, and difficulty using her legs. Consequently, after a year Read more…
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Jamie is a social media chronic illness advocate under the handle @LoveWarriorHugs, but her advocacy extends beyond social media. She is an epilepsy ambassador with the National Epilepsy Foundation, and she’s also been involved in successfully lobbying to change pain management laws in Illinois. Her passion for advocacy stems from Read more…
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Colby has 11 chronic illness and mental health diagnoses. These include chronic pain (currently diagnosed as fibromyalgia), PCOS (polycystic ovarian syndrome), asthma, IBS, eczema, PTSD, depression, anxiety, bipolar, ADHD and somatic symptom disorder. That last diagnosis might be the least well-known of Colby’s illnesses. According to psychiatry.org, “somatic symptom disorder Read more…
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Like many babies born with transposition of the great arteries, Amelia was born blue. Her blood was not circulating to her entire body because the two main arteries leading blood away from her heart were switched, sending blood in the wrong direction. She was immediately helicoptered to a larger hospital Read more…
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