Hypermobility Syndrome

Mrs_Arcanum

There are extremes in all situations. DD Best friend has this and is very philosophical about it (inherited through both parents). Still rides her horse & does as much as she can, rarely off school and refuses to let it control her life or curtail what she does. PE teachers do seem to have a problem understanding what is and isn't safe for her to do though. Neither parent mollycoddles her which also seems to help.

Trialia

*points to the other thread* There isn't a genetic test for type 3 (hypermobility) yet.

cara09

Hi,

Watch at 10.15 of the current episode of Casualty which was shown on Saturday. A patient with EDS featured and the Doc says: "Frequent flyer junkie with Ehlers danlos syndrome deliberately dislocates his shoulder then demands morphine"

Please complain to the BBC as this puts EDS in a very bad light to the general public. http://www.bbc.co.uk/complaints/

Video can be seen here: http://www.bbc.co.uk/programmes/b006m8wd

SingleSue

Well me and eldest thought it quite funny....and he has a definitive diagnosis of EDS with extremely frequent shoulder dislocations (his party trick) and I have a very likely diagnosis.

We weren't offended at all.

Trialia

I think I would have been, had I seen it. I'm tired of people portraying people like us as fakers.

formaldehyde_perfume

I just saw it, and it was about 30 seconds long if that. I thought the portrayal was of someone who was exploiting a different illness he had to get morphine because he was a junkie, I didn't think it tarnished other EDS people with the same negativity and 'Elhers Danlos Syndrome' was uttered so fast I almost missed it, so I'm not sure how much of the general public would have known, IYKWIM.

formaldehyde_perfume

Trialia wrote: »

I think I would have been, had I seen it. I'm tired of people portraying people like us as fakers.

He wasn't portrayed as a faker, it was more that he dislocated his shoulder to get some morphine as he was a junkie.

Trialia

formaldehyde_perfume wrote: »

He wasn't portrayed as a faker, it was more that he dislocated his shoulder to get some morphine as he was a junkie.

And yet given that he had EDS he would be almost certain to be a chronic pain patient regardless, which would mean morphine probably wouldn't get him all that high anyway. It's not exactly the best representation of someone like us that's ever been done, is it? That we might be people who use our condition in that way, and this is one of the rare examples people get of EDS patients on TV in this country? Not so great.

iwannanicerlife

I'm quite surprised at the early post about GOSH refusing to diagnose. My daughter was diagnosed locally with HMS/EDSIII around 2 years ago and this was confirmed by GOSH early last year. We have regular visits to OT & physio there and although we don't get written reports after our visits now, we did after our first trip which clearly stated her condition and its affects upon her (first trip was early last year so don't know if things have changed since).

Not only do we have time off for trips to GOSH, we also are supported by our local hospital with regular physio and OT visits.

HMS affects people in so many ways. Some people are lucky enough to have it mildly and can continue to live an almost normal life. Sometimes I probably do wrap my daughter in cotton wool but in it's most severe cases it really does have an impact on everyday life - seeing my 7 year old struggling is very difficult!

shays_mum

hi iwannanicerlife
Apparently they don't want to stigmatise the kids anymore eh!!?
Your are lucky to have been given a firm diagnosis, they have changed their tune recently. I see the OT's & Physio's as well, but they are v.vague in the terminology they use, no diagnosis, but 'hypermobility associated muscularskeletal pain'.
Apparently, they see thousands of kids like ours & as long as they are given physio earlier in the process its a tried & proven success. DD has been discharged from the rhuemy's & is in the hands of the OT & physio's only!
Only time will tell.......!

Ps)If anybodys kids went to the podiatrist, what advice/aids were given?, thanks in advance x