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I didn't know it was a disability, everything I've read on it says the majority of people get along fine with it
A majority of people do. My friend does. It was not until I had a dust up with an employer that I became aware that it is covered by the disabilities act 1995.
I would like to ask if you do not mind how old you are? I am 32. It would do no harm in asking for a bone density scan. When I had mine done they found I had osteo malachia largely induced by hms, I now take calcium supplements prescribed by my gp.
Hms is comparitively rare, more women than men seem to suffer from it. Has anyone suggested a diet change? This has a major impact on hms. Reduction of all animal produce i.e dairy products from cows- milk/butter/cream/cheese, no red meat except for every now and then, reduction of sweet things-chocolate etc.
We have goats cheese (which for your nephew would give him the calcium he needs)or cheese made from vegtable renet. Once in a blue moon I indulge in bacon. Milk we use completely skimmed. A number of people I am in contact with have found the reduction in animal products to make a considerable difference. Most importantly the less you weigh the less impact is put on your joints. With your nephew try to keep when he gets to school impact sports to a minium swimming is better.
Please do not fall into the nhs pit I fell into. If your health authority like ours here in Eastbourne is razor sharp then you will have no difficulty. In Hertfordshire we had to fight for every scrap of information and help.
There is a web site for the likes of us www.hypermobility.org.
I'm 30, my friend (woman) has also just been told she has it, she's 34.
I've not seen the phyiso yet, but the doctor just asked me to perform the same excerises my nephews physio did and had no problems referring me, I don't know if thats a good sign or not. I have been back and forth to the doctors with various joint aches and pains since my teens and it was never picked up.
I do keep fit, but I am quite muscley, I don't know whther that will help or make the pain worse as muscle is heavy
It seems we all fit into the same age bracket, my friend is 35.
I too am more muscle that anything else, I am 5' 2" tall and clock in about 8 stone.
Did you have any growth problems? I stopped short literally at 4' 1" when I was oh 11/12 yrs old and then shot up to 5' 2" when I was in my middle 20's- not uncommon I am told with hms. Go figure!!!
Also another commonality is your limbs are a tad longer than they ought to be i.e husband is nearly 6' tall 32" inside leg, moi 5' 2" 32 inside leg when it should be 28"-30". Long fingers and toes too.
There is a lot to hms, the best sites to read up on are the american ones where this condition along with fms became recognised and registered as a disability in 1984!!! go yanks
For a long time hms/fms has been thought to be something else until an american found it was something entirely different.
I'm 6' 4" and weigh around 14 stone my friend my only 5'
I'm not sure if any of my limbs are longer 
When you have your proper assessment all of this will come out in the wash. HMS, as I said before, isn't just funny joints. You can have stretchy, hyper-sensitive skin as well. And you may experience circulatory problems, speaking from experience. Definitely look at the HMSA website. When you are first diagnosed, it is a major help.
 thanks for your help 
Any time. I'm always around, me.
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