Can you test for EDS without seeing a geneticist?

[dyllanmurphy]

The process of finally seeing the geneticist to get the tests for EDS is a pain, to say the least. Apparently geneticists are so low in number that they throw up lots of barriers to seeing them, because their time is precious. Meaning they'd first send you to a cardiologist and/or rheumatologist to rule out other conditions first before they would even see you to test for it.

I fit the criteria for hypermobile type EDS but I'd like to rule out the other forms that you can test for.

Is there any way around these gatekeepers? Direct to consumer tests that are reasonable in price? Can primary docs order the tests?

 

[PisForPerseverance]

Invitae has a panel. They try to get you insurance coverage too. I'm not sure if it's direct to consumer or whether a doctor has to order but for potential for insurance coverage a doctor would have to. A doctor ordered for me but I thought I remember seeing direct to consumer. I'd ask them about a doctor network, I'm almost sure they have one, and that you'd like options for one for telemedicine or local that covers your insurance which you could give them the name of. They seem very helpful in general, they offer tests for free to family members of those who test positive for a diseases causing mutation, and they have payment plans. I would still get a diagnosis of heds if you don't have one already, I think many docs can do that and maybe even PT's. Good luck!

 

[PisForPerseverance]

Also I would use the Ehlers Danlos Society as a resource if you haven't already. They are great. Their website has webinars, a directory, support groups. They have a help line you call into or write into with any question or looking for resources and they answer best they can, with their medical experts if necessary. One of their webinars is a video of them answering a ton of questions from the help line, you might find that useful.