Rare & Undiagnosed Network

Update on The Szajnuk Family (aka The Zanik Family)

August 20, 2014 11:54 am

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April 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...

Oskar Szajnuk’s Symptoms

August 20, 2014 11:40 am

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Oskar’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...

Ava Szajnuk’s Symptoms

August 20, 2014 11:12 am

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Current 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...

PROFESSIONAL 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...

Testimonial from a doctor that cares

August 16, 2014 11:30 pm

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One 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...

Testimonial from Tonya Condas

August 16, 2014 11:24 pm

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About 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...

Testimonial from Chris Hart

August 16, 2014 10:42 pm

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In 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...

To Whom It May Concern and To All Mothers:

August 13, 2014 4:18 pm

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2017 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...