I have HSD, not EDS under new diagnostic criteria. I hate this because no one even knows what HSD is and if they do they take it less seriously than EDS. I hate that they redefined things to so strict. It makes it harder to be taken seriously and be diagnosed, Not easier
I might have a genetic form of cardiomyopathy, but we shouldnt test for it until my existing hypertrophy gets worse
I SHOULD get tested for cancer predisposition syndromes, seeing as i have a strong family history of cancer on my dad’s side and 1 in 40 Ashkenazi Jews has one
I should try to stop using my chair, feeding tube, central line, and be more active. (UM NO)
Offered no actual genetic testing, even though i have a family history of a bunch of shit.
Conclusion: Going to do 23&Me and Promethease or WXE (whole exome testing)
This is my shit in EDS awareness month.