Hello!

[Heather78]

Hi! My daughter was diagnosed yesterday with EDS HT, she is 4. I am looking for help and knowledge to understand this condition so I can help her lead a full and varied life as she hasn't been for the past year. I have CFS and have limited ability and don't want her to end up the same way!

[LoopyLou72]

Sorry you've not had a response yet. Your Daughter has been diagnosed at a young age so my main advice is that if somethings not right then fight for answers and support along with any treatment that can be given.

I was diagnosed 3 years ago at aged 40, having been ignored since childhood, and my damage is irreparable now due to pelvic instability impacting on all my joints. Bowel and bladder issues, along with the womb, are only just being dealt with.

Hopefully you'll get some responses from parents with children who have the condition but physio is likely to play a big part in your Daughters future so the hope will be that the condition can be maintained rather than being allowed to deteriorate.

Have a look on the EDS UK website, or the HMSA, as there are also forums there and loads of advice that may assist you and your Daughter on your journeys.

Xx

[Jay66]

Look online at edhs.info which has lots of information about the condition. I was diagnosed aged 47 and told nothing really could be done, but the outlook is much brighter when you are diagnosed young. However, not everybody gets every different part of eds - I don't have POTS for example, and only 2 of my joints sublux regularly.