wat_da_ell

There is a lot of misinformation in this thread. EDS is not one disease. There are over 5 types of EDS and not all of them are inherited in an autosomal dominant fashion.

I'm a physician and I don't think that anyone who knows what they're talking about with classify hypermobile EDS as a "zebra". It's not very rare in the world of medicine.

I don't doubt that OP has hEDS but I feel like this thread is contributing to the online glorification of hEDS and there is a lot of misinformation in this thread.

you say you’re a physician who hates research

When did I say that? You're being dishonest

isn’t it then reasonable that those with debilitating symptoms would then find ways of getting by — and a sense of community — online?

There is a large amount of difference between finding a community online and self diagnosis. Again, you're being absolutely dishonest here and for some reason you seem very sensitive in regards to this subject. No one doubted the validity of your experience but somehow you must come to the defense of tiktok trends. I never "wrote off" hEDS. I see many patients with this diagnosis and I have made this diagnosis previously. People are only saying that there is a current online trend for people to self-diagnose (often inaccurately) themselves with hEDS. This is a real phenomenon seen by many clinicians and I don't know why you find it so difficult to believe.

you’re inferring the research I’m referencing is worthless because it’s reported (but not exclusively conducted) by a medical charity,

You are sharing a website that doesn't list its sources and provides no links to scientific articles. This is as much "research" as anti-vaxxers who get their information on facebook.

I’m impassioned about this subject oure

Yup it definitely feels like you've made this illness your whole personality! This is not very healthy.

Edit:

bedside manner is sorely lacking

You're completely delusional and entitled if you think this is a bedside encounter You're not my patient. This is an online forum. Get over yourself.

Yup, again I feel like names like this contributes to the glorification of hEDS and the fact that it is "trending" online.

Nah I'm a physician and there is 100% an online "trend" towards self diagnosis of hEDS. It's the only type of EDS that doesn't have confirmatory genetic testing available and therefore makes the diagnosis somewhat "subjective".