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August 20, 2014 1:08 pm
3After Ava was released from Children’s Hospital of Wisconsin, she went to stay at her the home of her grandparents. On July 19th, 2013, a rainbow magically appeared...
August 20, 2014 12:39 pm
9This is a section of Lucy’s story from The Szajnuk’s Journey I feel like I missed an entire year of Lucy’s milestones. Lucy started showing similar symptoms in...
August 20, 2014 11:54 am
2April 27, 2014 Dear Family and Friends, I wanted to update you again on our family. I have had so many wonderful people reaching out to us recently...
August 20, 2014 11:40 am
1Oskar’s Endocrine Clinic Note: “I encouraged mother to have genomic sequencing to try to elucidate the cause of what appears to be autosomal dominant dysautonomia.” CURRENT SYMPTOMS: -Cannot...
August 20, 2014 11:12 am
2Current Symptoms: -Severe headaches -Severe leg pain -Cannot regulate her body temperature (She overheats when active or in warm weather) -Hands and arms mottled -Entire body mottled -Face...
August 20, 2014 10:30 am
1PROFESSIONAL EXPERIENCE July, 2014 – Present RUN (RareUndiagosedNetwork.org) Park City, UT Co-Founder RUN stands for Rare & Undiagnosed Network. We’re a group of advocates, patients, families, researchers, healthcare...
August 16, 2014 11:30 pm
1One of my mantras as a physician is that while I can never truly know exactly what another person is experiencing, I should always strive to understand and...
August 16, 2014 11:24 pm
3About 30 years ago my mother was diagnosed with progressive type Multiple Sclerosis. She was a stay at home mom and raised me and my brother with no...
August 16, 2014 10:42 pm
2In a friendship that has spanned thirty years, though the ups and downs of life, you might wonder where will this begin? It is without question in my...
August 13, 2014 4:18 pm
142017 Update: The Szajnuk’s Diagnostic Odyssey Written in July 2014: To Whom It May Concern: I am a mother of three young children, and all three have been diagnosed...