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I’ve had a couple DMs from people asking how to get diagnosed with Ehlers Danlos Syndrome (EDS) or “if it’s easy to get diagnosed with EDS” and I thought I’d just write a blog post so I can link it to people.
Spoilers: it’s not easy.
Or: lack of patient knowledge about EDS is not the only reason most people are only diagnosed until their 40s.
Most doctors don’t feel that they know enough about EDS to diagnose it, even though the diagnostic guidelines are available for anyone to check. In addition, if any genetic testing is involved, they don’t usually order that kind of thing. Note: if your doctor wants to learn more, there is now a free continuing medical education class on EDS.
So in order to get diagnosed Officially with EDS, most of us end up seeing some sort of geneticist. The problem is that genetics is a relatively new field in medicine, so there is a shortage of geneticists. Also, some geneticists specialize in fertility/IVF or in infants and children with genetic disorders. So first off in your quest, you need to find a geneticists who: (1) specializes in EDS/connective tissue disorders/hypermobility; (2) is taking new patients; (3) that you can get to; (4) that you can afford.