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Finally got my referral to the EDS specialist/geneticist. I’m trying to fill out the paperwork they sent me which is 1/2 family history. I just messaged my mom with a list of people I needed help with and she called me. During the call she flat out told me she doesn’t agree with what I’m doing (genetic testing/seeing a geneticist) and was resistant to provide any info. She told me she didn’t see the point because it wouldn’t change my treatment. Yes, there’s a chance nothing changes, but there’s also the chance they uncover something. Even if I just get a diagnosis and my treatment doesn’t change it still makes my medical team informed about what’s going on.
I have spent 3 years working on a degree in genetics to do the same exact work the people I’m going to see are doing.... I feel let down and like she doesn’t support me. I’ve done my research on this both academically and personally, I know the risks/possible consequences. I know it’s a touchy field with lots of controversy; that has been drilled into my head since Day 1 of classes.
I just don’t know what to do about either situation. I’m currently stuck in a wrist and thumb brace on my dominant hand because I can’t keep them where they belong. That’s not normal! I guess I just want to know I’m not alone and want someone to understand.
#EhlersDanlosSyndrome #HypermobileTypeEDS #Support #GeneticTesting #specialist #Undiagnosed #Anxiety #Depression #ChronicPain
