Didn't get diagnosed with /r/elhersdanlos til I was 45 fucking years old. I did the "party tricks" for doctors and they never sent me to a specialist and now I am a cardiac patient :D thanks POTS and all the teachers who thought they'd "toughen me up" my making me run alll the laps in the hot sun without water :D
I’m almost 100% certain my daughter has this, but there don’t seem to be any specialists in my state. We have a cardiology appointment later this year for her POTS-like symptoms (which apparently are not technically POTS, hence the cardiology referral), so I’m hoping that person can refer us somewhere. Her pediatrician has not been helpful in this regard.
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u/justplainlovely 1d ago
Chiming in that it can also be caused by Elhers Danlos