Work Support Group

Hi Caroline
HCP means a Health Care Proffesional, I used that to include anybody from a nurse upwards, I was thinking mainly of your local GP and it would seem you have already discovered the problem yourself. It also appears that you have gone through a consultant and are now able to see an expert in london which is what I meant about having to travel. Glad you've got that far and hope you can get some help. It's usually hereditary but my son got it spontaneously and it took a couple of years before he was diagnosed. We shall see if his new baby (1 week) has inherited it as he grows up, but at least we now know what to look for.
Kindest Regards
Peter

Aww really sorry to hear I hope the baby doesnt have it, its not a easy thing to live with.

I dont know where it came from in my family it may be my fathers side but I dont know him at all or where he is. I was trying to track him down just to get some medical info but I suspect it has come from my mothers side and am sure there are a lot of tell tale signs in some other close family members but I dont know how to approach that.

I basically found out what it was on my own through chance but had been having loads of problems for years and loads of other problems since child too and then a couple of minor accidents really messed me up and then I found out about EDS and knew it was that, getting that diagnosis finally was validation that I wasnt mad or a hypochondriac and since knowing more about it highlighted some minor issues my daughter has had for years which was also down to EDS, she started out having problems with one leg and hip and now its both and her arms and stuff as well.

Its hard to deal with at times cause it may not be possible for my daughter to have children not only because of passing it on but also because of the possible medical problems even being pregnant so she needs genetic counselling.

Congratulations on your grandchild I really hope that he doesnt have EDS but if he does at least his father will know and will also understand which makes all the difference I think.

Thats been one good thing at least I know about it and I know what its like ot live with it, if I didnt I doubt I would have got to the stage with a diagnosis for my daughter and she would feel the way I felt and its horrible having all this weird stuff going wrong with your body and people think your exaggerating or making it up and they really dont understand.

Thanks again!!

Dear Carolyn

I am an Ehlers_ Danlos person too, I was only diagnosed 6 years ago after 50 years of constant subluxing, fractured and severely arthritic joints. At my ATOS WCA the health care professional focussed only on what he called my "mild arthritis" and when I tried to explain I have EDS he said " oh yes, everyone tries that one" !!
The vast majority of people and even medical professionals I meet have never heard of EDS or if they are aware do not have sufficent knowledge of the condition. My son and little grandson also have EDS. My mild arthritis (lol) has resulted in 5 surgical procedures in the last year alone. I won my appeal at Tribunal to be moved from WRAG to Support earlier this year. The team at UCH are great, but I am well cared for by the orthopaedic team at Guys. I don't go to rheumatology anymore as they missed the condition for 25 years! Good luck with your applications and take care.

Hi Carolyn

I found what you were saying about not knowing where it came from in your family. I have researched our family and discovered that in our case only the eldest child in each generation is affected. Weird or what!! I really feel for you and your family, do please take care of yourselves.