Hypermobility syndrome

mkzebra

http://www.hypermobility.org/forum/

This website has helped me a lot.

SingleSue

All my boys plus myself have HMS/EDS at varying stages.

The first diagnosed was my eldest son after years of being told he was either having growing pains or I was being an over anxious mother, it took a locum doctor making a referral for suspected Marfans before we found out it was neither growing pains or me being over anxious but EDS type 3 with some crossover to classic type (they were borderline on the Marfans but decided to fall on the side of EDS)

James (eldest), has multiple constantly dislocating joints, large and small, POTS, GERD, raynaud's and a heart murmur (not quite as innocent as first thought). His schools have been very good, although one is more suited than the other (6th form is split over two schools) as they have a lift. If he is having a bad dislocating day, they allow extra time for him to get from A to B, allow him to use the lift and for exams and lessons, he uses a laptop as his fingers and wrists dislocate when he is writing. They also allow him to wear gloves and thicker jackets/extra layers in class as his hands are constantly cold and he feels the cold a lot easier than other students.

They have been known to get in a panic though, especially in the early days when one of his larger joints have dislocated but they have relaxed a little more now.....his heart 'moments' and POTS attacks though still scare and send them into mini panics.

He struggles to keep weight on and needs a huge amount of calories to just keep his weight stable...he is currently underweight but no amount of extra feeding gets those extra pounds needed on (his thyroid has been checked)

He does not claim any disability payments....mind you, he doesn't do anything to protect his joints against further damage either! (Kids eh?). He pretty much does not allow his conditions to rule his life and makes no special provision (apart from gloves, extra layers and laptop) to his lifestyle.

Middle son doesn't dislocate quite so much but as he is getting older, his dislocations are becoming more frequent. He also bruises very easily and extensively (a small knock produces a huge bruise), takes ages to heal (a cannula mark took ages to scab over and heal and you can still see the mark 3 years later!). He has just started with the keeling over thing that James started to develop at the same age.

He had been investigated for a blood clotting disorder when he was younger as he bled so extensively for the smallest of cuts or bruised so badly for the smallest of knocks...you can imagine what he looked like as a 3 year old hyperactive and clumsy child can't you?

He does not receive DLA but used to although he has other disabilities and that was prior to his EDS was noticed.

Youngest was diagnosed hypermobile as a toddler due to a delay in walking. At that time, it only affected his ankles and he had to wear boots to enable him to stand and walk. He also had a great deal of pain when he had to be on his feet for any length of time.

He has now also started dislocating (just his hips mainly at the moment), a lesser amount than his two brothers but is also developing the stretchy skin that James first exhibited and that now middle son is getting more of. Due to the problems with his fingers, he has to use special writing tools.

He does receive DLA (HRC LRM) but he also has a whole host of other more serious life threatening problems.

Now for me, I have always been very hypermobile, great when I was a dancer, not so great now I am 42. I now use walking aids full time and a wheelchair if I have to be on my feet longer than a few minutes but if I had known then what I know now, I could possibly have not got to the stage I am at as I would have known to protect my joints rather than push them further than they wanted to go.

I really did not look after my body, I pushed it completely beyond its limits, had silly injuries and enjoyed 'performing' my party tricks to groups of incredulous friends. Even now, I try to push it further than I should..difference now is that I regret it pretty much immediately as it leaves me unable to do begger all for the next week.

I don't claim DLA......I haven't quite mentally got to that stage yet (ok yes, I am still in denial and hoping I magically get better!)