Gina Szanuck - Rare & Undiagnosed Network


Gina Szajnuk is the mother of three children with rare and undiagnosed genetic dysfunctions.

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woman holding a note that someone left on her car that says Handicapped? Low Life!

To the Person Who Left Me a Rude Note After I Parked in a Disability Spot

You left a rude note on my car that said, “Handicapped? Low life!” after I parked in a disability spot. Even though I had a disability placard in my car, it’s clear you still didn’t believe me. Instead of being upset by it, I would like to take this moment to educate you and to advocate for [...]
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Rare Disease Doesn't Disappear in the New Year

No, rare disease folks — specifically folks in the rare neuromuscular disease community, like me — cannot heal ourselves with New Years magic. For many of us, a cure and relief is our greatest wish. So when folks insist we “better get better,” or as one former friend put it, “if I prayed hard enough” and “got myself [...]
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The Advice I Received That Made Our Family’s Rare Disease Journey Less Isolating

When my son was born, we were so proud and posted photos on social media to share our joy with the world. During his first week of life, we shared only a few photos of our family holding him and everyone smiling ear to ear. Then something terrible happened. He became seriously ill.   Over [...]
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When I Told an ER Doctor 'I'm Here Because I Need Your Help'

I’ve never found the emergency room to be a particularly amicable place. It’s an assembly point for people in discomfort, be it from broken bones or food poisoning. However, when you have a rare disorder and a complicated medical history like me, it hasn’t always been the place where I could actually receive help. I was [...]