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TEDMED Thank you!!
#TEDMED Frontline Scholar @ginaszajnuk is co-chairing Utah's 2015 Rare Disease Day in February. Follow @utahrare for details! — TEDMED (@TEDMED) January 20, 2015
Utah’s Rare Disease Day Events
Utah’s 2015 Rare Disease Day is going to be BIG this year, and we’d love for you to be a part of it. 🙂 February 27, 2015 —...
Katie goes to a JAZZ GAME!!
January 16th, 2015 was the best night I’ve had in a long time. For the first time since I had my surgery I got to go out with...
Traveling with oxygen
Today I am flying on an airplane with Justin for a corporate trip. It is an opportunity of a lifetime! And, I feel truly blessed to be included....
Lucy’s pain
It breaks my heart to have my three year old daughter continuously wake up during the night crying that her leg hurts. She tells me that her leg...
Ava’s shoulder is hurting daily now…and no one has any answers for us
I continue to believe that Ava is the strongest little girl I know. She is in pain almost daily with her shoulder and/or tummy. As a mother, it...
EoE diagnosed again in our family
Ava and I have now both been diagnosed with EoE, Eosinophilic Esophagitis. Since we do not know what the cause is of my EoE, the doctor ordered a...
Katie Nuffer shares her story with MHE
Hey Everyone, my name is Katie Nuffer. Most people look at me and don’t think that any thing is wrong with me. And as much as I wish...
Megan’s Update on Katie
The past two months have been very tough, to say the least. I have not experienced this much heart ache since 2008, when my father passed away. I...
Hearing the words “Unknown Progressive Disease”
I am now officially very scared. My team of doctors have admitted that they do not know what is happening right now. They called me “a puzzle” yesterday....