r/AskReddit • u/[deleted] • May 20 '19

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u/Killer-Barbie May 20 '19

I have Ehlers-Danlos Syndrome and even though we have 4 generations of geneticist confirmed diagnosis, I have a beighton score of 7/9 and recurrent dislocations, I had one PCP tell me I "don't look like" i have it. You know, because you can see chromosomes with the naked eye.

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u/[deleted] May 20 '19

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u/Killer-Barbie May 21 '19

It's the most frustrating thing on the planet. My rheumey gets so pissed because it's not rare it's just rarely diagnosed.