Recent Posts
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Harlie-Juvenile Dermamyositis
Harlie is a 14 year old girl who has lived a very active life, playing softball, basketball, and other sports- right up until August 2014. When she started having...
Michael-undiagnosed-with multiple diagnosis including dysautonomia…
Hello, my name is Michael. I am 13 years old. I have dysautonomia, POTS (Postural Orthostatic Tachycardic Syndrome), MCAD (Mast Cell Activation Disease), apnea (central, obstructive, and mixed),...
Hailey-Undiagnosed with Migraines & POTS: Postural Orthostatic Tachycardia Syndrome &
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...
Ricki-Neurofibromatosis Type 2
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...
Stephanie Valdez: Harlie’s Juvenile dermatomyositis (JDM) update
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...
Michael-Undiagnosed
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...
Katie-MHE (multiple hereditary exostoses)
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...
Stephen Jenkins shares about his two sons and cystinosis
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,...
Katie-Cutaneous Mastocytosis
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...
Preston-Eosinophilic Colitis
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...