The Good, the Bad, the Ugly: Talking about Every Aspect of Your Rare Disease
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The Good, the Bad, the Ugly: Talking about Every Aspect of Your Rare Disease

As I was reading a post about Ehlers-Danlos syndrome on Stanford Medicine's Scope blog, a particular line caught my eye. The author of the post writes about "the moment [EDS patients] open our eyes…

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An IPF Diagnosis Before 30: It Doesn’t Just Affect Older Adults
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An IPF Diagnosis Before 30: It Doesn’t Just Affect Older Adults

Idiopathic Pulmonary Fibrosis (IPF) most commonly affects aging adults, but for columnist Charlene Marshall, the disease struck in her late 20s. A diagnosis in and of itself is shocking, but…

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Guillain-Barre Syndrome Survivors Connect Through Online Community
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Guillain-Barre Syndrome Survivors Connect Through Online Community

The National Institute of Neurological Disorders and Stroke states Guillain-Barre syndrome (GBS) affects 1 in 100,000 people. Let that sink in. 1 in 100,000 equates to 0.001%. Compare that to the…

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One Doctor’s Fight Against His Castleman: This Time, It’s Personal
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One Doctor’s Fight Against His Castleman: This Time, It’s Personal

Not many people can say they’ve dedicated their life to curing the disease that could lead to their death, but David Fajgenbaum certainly can. In a fascinating Science Magazine article, David…

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Here’s Why You Should “Think Zebra!” Throughout April
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Here’s Why You Should “Think Zebra!” Throughout April

What do zebras have to do with primary immunodeficiency (PI)? Nothing and everything, it seems. Apparently, there’s a saying in medical school that goes: “When you hear hoof beats, think…

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Running Helped This Woman with Trigeminal Neuralgia Find Herself Again
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Running Helped This Woman with Trigeminal Neuralgia Find Herself Again

At first the running was exercise, a way to lose a few pounds. Running soon became the way Beth Markesino forgot her diagnosis of trigeminal neuralgia (TN) – the way…

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This Guy Keeps it Real in His Blog About Living with MS and Narcolepsy
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This Guy Keeps it Real in His Blog About Living with MS and Narcolepsy

Fun fact about Bradley Mann: he used to feed boiled eggs to the pet raccoon at his nursery school. Trust me, this is only the start to an interesting life…

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Bitten by a Tick at 10: Her Years-Long Battle with Lyme Disease
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Bitten by a Tick at 10: Her Years-Long Battle with Lyme Disease

The tick bit Margie when she was 10, marking the start of a battle with Lyme disease, a battle that continues to this day, into Margie’s 50s. Hers is a story…

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Murder in the Royal Family: How Researchers Discovered Hemophilia in Queen Victoria’s Bloodline
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Murder in the Royal Family: How Researchers Discovered Hemophilia in Queen Victoria’s Bloodline

Royalty, murder, lots and lots of blood – sounds like elements from the plot of a Victorian-era thriller. Actually, this story comes straight from hemophilia history. Science Magazine published a…

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Artist Turns His Experience with Facial Dystonia Into Stunning Works of Art
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Artist Turns His Experience with Facial Dystonia Into Stunning Works of Art

The artist's medium? Wood, mirrors, and various other materials. His art? Jarring and beautiful headpieces—Tiago Valente's way of understanding his own experience with dystonia. Tiago called it facial dystonia, and from…

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Arthritis Doesn’t Just Affect Adults: Stories from Kids with JIA
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Arthritis Doesn’t Just Affect Adults: Stories from Kids with JIA

He wrestles, plays football and enjoys the day-to-day activities many 14-year-old boys would. Unlike many 14-year-olds, Drake was diagnosed with SoJIA, or systemic-onset juvenile idiopathic arthritis. “I have yet to…

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NINETEEN Members of This Family Cycled for ITP
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NINETEEN Members of This Family Cycled for ITP

Some memories come to mind so vividly you remember every sensation: the smells, the sights, the sounds, the feelings. For me, many of my most vivid childhood memories involve the…

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