Recent Posts

Page 27 of 49

Hailey-Undiagnosed with Migraines & POTS: Postural Orthostatic Tachycardia Syndrome &

February 19, 2016 5:29 pm

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I am the mother of three girls. My middle daughter, Hailey, has always been very athletic- climbing at a young age, great coordination and always wanting to try different...

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Ricki-Neurofibromatosis Type 2

February 17, 2016 5:28 pm

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Hi my name is Ricki. You look at me and probably see just another normal face in a normal crowd. But there is more than what meets the...

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Stephanie Valdez: Harlie’s Juvenile dermatomyositis (JDM) update

February 16, 2016 9:44 pm

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Sorry it’s been such a long time for me to get an update out on Harlie. She’s been keeping me very busy these days!  I was going through some of...

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Michael-Undiagnosed

February 16, 2016 5:32 pm

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My name is Michael  and I am 13 years old. (Diagnosis still not fully determined)   I live in the United States of America. I’ve been fighting to...

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Katie-MHE (multiple hereditary exostoses)

February 15, 2016 10:08 pm

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Hey Everyone, my name is Katie. Most people look at me and don’t think that anything is wrong with me. And as much as I wish that was...

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Stephen Jenkins shares about his two sons and cystinosis

February 15, 2016 6:50 pm

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Samuel and Lars were born with a rare genetic disease called cystinosis.  It is an autosomal recessive lysosomal storage disease, and it leads to progressive kidney failure, corneal disease,...

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Katie-Cutaneous Mastocytosis

February 12, 2016 6:19 pm

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Katie-15 years old Diagnosis-Mastocytosis Country-USA My name is Katie. I am 15 ½ years old and I live in Utah.  I have a rare disease called Mastocytosis. I was...

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Preston-Eosinophilic Colitis

February 9, 2016 6:06 pm

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Preston has spent all of his 15 years of life living in beautiful Utah with his two older sisters and one older brother. Preston has Eosinophilic Colitis, one...

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Aliyah-VACTERL Assoc., Gastroparesis, Chronic Lung Disease

February 9, 2016 6:01 pm

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Aliyah is 14 when she was born she weighed 3lb 10oz. She has the VCTE of the VACTERL Association (V) = vertebral abnormalities (A) = anal atresia (C)...

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Rachel Nielsen: “Daughter of a King.”

February 7, 2016 6:01 pm

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I’ve always had problems growing up. When I was born, I was 6.5 lbs. When I was 4 years old, I was still the size of an 18...

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