Ehlers-Danlos syndrome

[debs40]

I took DS to the Hypermobility clinic at GOSH yesterday. We were told by our OT that he was hypermobile but no one has been able to suggest anything to help.

They confirmed Ehlers-Danlos syndrome Type III and have started him on a list of exercises. He has been recommended to have OT and podiatry.

We have had to pay privately to access the service but I wondered if anyone had been through the NHS (out of area).

I also wondered what people's experience of Ehlers-Danlos syndrome and treatment was.

We have a thread on here called EDS Hypermobility where their are quite a few mn with eds themselves and their dc and marfans, some with experience of GOSH and other hospitals diagnosis etc, come and join us and tell us all about your experiences.

Thanks. Will search it out!

Hi!

My dcs were both diagnosed round age 8. We have found physio quite useful, swimming very useful, OT also very helpful. Both got very much worse during the 8-10 growth spurt, and dd whose growing has slowed down (at nearly 14) is noticeably better.

That is useful ifo to know, I am sure that my ds's pain and dislocations are related to growth spurts. What kind of OT support did you get, that is the one thing I haven't asked for or been offered?