Ehlers-Danlos Syndrome

Parent Q&A

  • EDS or POTS support

    (3 replies)

    I would like to find a support group for teens with Ehlers- Danlos Syndrome and/or a support group for teens with POTS. It would be wonderful if there was one for parents also, and if there isn’t one for teens but someone knows of an adults group, I would like that information also. I am on the east side of the Tunnels but I’m willing to travel a bit. Thanks

    RE: EDS or POTS support ()

    Dear Nicole,

    My daughter has hypermobility--not Ehlers-Danlos Syndrome--as far as we know. She just returned home from residential treatment this summer, and we haven't found any really good Physical Therapists in the area yet. We were really lucky to find a PT with Ehlers-Danlos Syndrome in the Salt Lake City area: that made such a huge difference, as other PT was actually making her condition worse. I would love to connect by email or phone if we can do so confidentially, just to give support and/or to learn of any resources in the area. I wish I could refer you to some local resources or a support group, but I'm at a loss. I feel for you and your teen. I know my daughter's PT in SLC was really into letting her patients know they could lead a good, enriching life even with Ehlers-Danlos Syndrome.  Take care...

    RE: EDS or POTS support ()

    I don't know of a support group in the area, but would welcome one. I relocated to the area from NYC a year ago and I'm still trying to find specialists. I have EDS Type 3. 

    RE: EDS or POTS support ()

    Hi Nicole,

    I don't know of any groups, but you should talk to Dr Rachel Zoffness in Berkeley. She specializes in tweens and teens who have medical conditions, chronic pain, migraines etc and we think she's just awesome. She has this way of explaining things that makes medical issues - and kids' emotional responses to medical issues - completely understandable, manageable and clear. She does CBT (cognitive behavioral therapy) and we've used her multiple times for multiple issues, as have a few of our friends. I cannot recommend her highly enough, she helped us so much. Her website is zoffness.com. Wishing you the best of luck and may the force be with you!!

    - Like-minded parent