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Rare Disease Almost Takes Young Mom’s Life

HypoGal, My Story Most of my life I have never considered what the words, “chronically ill” meant. I had related the words,” chronically ill” to… Continue reading Rare Disease Almost Takes Young Mom’s Life

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Stiff Person Syndrome (Stiff Man Disease)

My first symptoms came back in August 2012, where I starting having muscle activity such as small spasms and fasiculations (muscle twitches). Soon, I was… Continue reading Stiff Person Syndrome (Stiff Man Disease)

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my rare disease

hello my name is Ambur an I have polymyositis with interstitial lung disease I was diagnosed In 2010 but I started getting sick in 2008… Continue reading my rare disease

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Sian’s Battle with Sturge Weber Syndrome

My daughter Sian was born on April 7th, 1984 with a port wine birth mark on her face and across the top centre of her… Continue reading Sian’s Battle with Sturge Weber Syndrome

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Laurents battle to be heard

Laurent has health problems from his birth of. Till he was 5 years old nobody believed him or us the parents. Then they told us… Continue reading Laurents battle to be heard

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Living with PVNS`

Back in 2010 I was out in Lake Tahoe, California visiting my family and we went Skiing. While skiing, I fell and afterwards my knee… Continue reading Living with PVNS`

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Aah Shut! Here I go again!!

i’ve always been driven by positive stress. It has given me the drive to work my butt off in education, in supporting husband’s businesses, in… Continue reading Aah Shut! Here I go again!!

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Her strength, my inspiration.

When I was 5 years old, my mother was diagnosed with a rare form of Muscular Dystrophy, Dermatomyositis. It affects roughly 5 out 1 million… Continue reading Her strength, my inspiration.

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CGD Diagnosed Too Late

On October 10, 2010 in Phoenix, AZ we had a baby boy we named Joshua. He was healthy and full term but he swallowed miconeum… Continue reading CGD Diagnosed Too Late

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