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Only person living with this disease

At the age of 3 I almost lost my life to a muscle disease that was pretty uncommon in children. Rhabdomyolysis is the breakdown of… Continue reading Only person living with this disease

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A “lottery” I did not want to win

For several months when I would go for routine blood work all would be normal except for a few liver function tests — When additional… Continue reading A “lottery” I did not want to win

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Running With The Zebras ; Join The Herd, Spread The Word

Hello to all, How many if you have doctors that say “you’re special”? How many of you can’t even remember what it was like to… Continue reading Running With The Zebras ; Join The Herd, Spread The Word

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8 years since my diagnosis – Primary Lateral Sclerosis

In the beginning of 2007 I was falling down often. I also began working at a new job. I was 35 and living in Seattle.… Continue reading 8 years since my diagnosis – Primary Lateral Sclerosis

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Thrown for a Loop

I was diagnosed with Gorham-Stout Disease in 2011 and Lymphangiomatosis in 2014 first of 2015. This news changed my life. The first time I saw… Continue reading Thrown for a Loop

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Rare Chromosome Disorder

My son Logan was diagnosed with a Rare Chromosome Disorder an Unbalanced Translocation of chromosomes 1 and 8. He has 15 different doctors at University… Continue reading Rare Chromosome Disorder

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Sonya’s Story: A Journey with CDKL5

My formal education is in Speech Language Pathology, which my husband jokingly tells me is the exact reason our fourth child was born with an… Continue reading Sonya’s Story: A Journey with CDKL5

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story of courage- Manal

Story of Courage MANAL ; an inspiration Hello everyone. Before sharing the happenings of aHUS gale on us, I want to introduce Manal and our… Continue reading story of courage- Manal

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Oldest to have ever lived with Stuve-Wiedemann Syndrome

My name is Cami. I’ll be turning 26 in just three short weeks. I am thought to be the oldest to have ever lived with… Continue reading Oldest to have ever lived with Stuve-Wiedemann Syndrome

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