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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Living with a chronic health condition is difficult enough, but managing health records, medications and symptom tracking can feel impossible. That’s what the folks at Guava are trying to fix. They have created a free centralized holistic health management tool that integrates with over 50,000 health organizations across the US Read more…
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Danielle was born a micro preemie at just 25 weeks, weighing only 1 pound 8 ounces. Diagnosed with cerebral palsy, doctors gave her a .5% chance of living a meaningful life. Alongside cerebral palsy, she also lives with POTS and scoliosis, but this has not stopped her from owning a 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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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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In 5th grade Billie’s classmates were all evaluated for scoliosis, and she was the one person in her entire class who had it. Scoliosis is a condition in which a person’s spine has an irregular curve, and as Billie got older this condition got worse and worse. Her spine was 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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KYRIANNA is a watercolor artist based in southern Oregon, who creates striking images that visualize chronic pain and illness. Since these conditions are often invisible, KYRIANNA provides a profound opportunity for her clients to see a representation of their conditions. Her process involves an in-depth interview that she calls a Read more…
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Nancy Muir’s diagnosis journey has been more difficult than any marathon she has ever run. During her 24th marathon, Nancy began experiencing hip pain that concerned her enough to seek medical care. She was diagnosed with hip dysplasia, a condition where the hip socket doesn’t fully form or cover the Read more…
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Numbers never made sense to Michelle. She would struggle to follow the steps in a math problem, could not tell time from the face of a clock and could not memorize her multiplication tables. At an early age she was diagnosed as having a learning disability, eventually identified as dyscalculia. Read more…
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