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Ehlers Danlos Syndrome: Can't get diagnosed
Chronic Pain | Last Active: Oct 19 2:34pm | Replies (20)Comment receiving replies
Can I ask what area of the country you’re located in? Also are you having any vascular involvement i.e. have you had like meet your vessels rupture? I was first diagnosed with EDS back in 1994 it is since been changed to benign hyper mobility syndrome.Because I don’t have the vascular involvement and my understanding is they have change the designation for those of us that don’t have life-threatening disease.
Replies to "Can I ask what area of the country you’re located in? Also are you having any..."
What you're going through is almost exactly what my daughter has been experiencing for 4 years , We have been to every kind of specialist , and even her own PCP is at a loss . Finally ,
someone diagnosed her with EDS about a year ago because they couldn't figure out what else it might be . We have tried every source of pain relief , but to no avail . She still suffers daily .
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Hi Karen and welcome. Thank you for bringing up the distinction between Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders HSD. Here's further info from the Ehlers Danlos Society for anyone interested.
https://www.ehlers-danlos.com/what-are-ehlers-danlos-syndromes-eds-and-hypermobility-spectrum-disorders/
Karen, can I ask how you're doing and how you manage HSD?