Living with SETD5/Rare Genetic Syndrome
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YouTubeSimple Joy Filled Living
I'm so so so proud of my miracle ❤️🦸‍♂️🥹 #setd5 #raredisease #medicallycomplex #jtube #gtube #autism #advocate #gastroparesis
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You’re probably wondering about the snacks well I call it a feast. I have to eat these every night. Some people with SETD5 syndrome have an extreme need for routine and I have to eat my feast every night. I have always had an extreme need for my routine noted by my doctors. I also do talk to myself a lot sometimes but I’m always trying to be consideret of others. I made sure to bring my feast with me on my road trip. #lazychips #cheezits #cheetos #setd5syndrome #setd5syndromeawareness
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