Posts tagged ‘rare’
Page 1 of 2
UNDIAGNOSED is a DIAGNOSIS: The Szajnuk’s Journey Updated!
UNDIAGNOSED IS A DIAGNOSIS: Living in a Diagnostic Odyssey x 4 By Gina Szajnuk I have three children that are officially diagnosed as Undiagnosed. They have an Undiagnosed...
Undiagnosed Alliance Flyers
Dear Undiagnosed Alliance, Please find the Undiagnosed Day flyer! Thank you all for your continued support of the Undiagnosed Alliance. I had several more organizations email me to...
Angel’s Hands Foundation Goes Above and Beyond
Mark Kristensen and his Angel’s Hands Foundation (AHR) generously donated towards our very own Rare Teen, Hailey Sampsel, for her travel to the three-week Comprehensive Pain Rehabilitation...
A Dedicated Rare Disease Platform to Find Answers. Faster.
We have tirelessly searched for answers and have sacrificed nearly everything for us and for our loved ones with a rare or undiagnosed disease to receive the information and...
Lucy home from ER. Abdominal Migraines with Visual Complications due to Autonomic Neuropathy
Lucy Szajnuk is four years old and lives in pain every single day. I was glad to hear that she did not have papilledema like Ava did in...
Headed to ER with Lucy Szajnuk
Lucy has had stomach pain for a week now. We just figured it was her normal stomach pain. However, she’s begging for a scope. She’s been screaming crying...
Gina’s “Living in a Diagnostic Odyssey, Times Four”
Very excited to share my journey through our diagnostic odyssey this week at the Illumina supported Satellite Symposium at the ACMG Annual Clinical Genetics Meeting in Tampa, FL! ...
Jaderee-Eosinophilic Colitis
Jaderee Ann, 17. I have eosinophilic colitis. I live in the United States of America. I have, acid reflux, nausea, occasional vomiting and constant, uncontrollable diarrhea. It started...
Calen-Undiagnosed and Deletion/Duplication Chromosome 19
My name is Calen. I am 15 years old. My parent’s have many ridiculous nicknames for me, but I can best be described as fun loving fury. I...
Rachel- Undiagnosed with EOSINOPHILIC ESAPHAGITUS/COLITIS
Rachel, born in 1999. The youngest of four children. She has two brothers, a sister, and a sister-in-law. Her diagnoses are: EOE, EC, Gastroparesis, Delayed Motility, Orthostatic Intolerance, Neurogenic Bladder,...