How can i tell you? Please help me?

[Guest]

people at school come up to me all the time to ask why i don't to PE or participate on school trips but i never really know what to say. i have only just been told that i have HMS and was recommended this website by my doctor. please can you tell me - in a way my friends would understand - what HMS is. eventhough i know what it is myself i find it hard to put into words what is wrong with me

please help


love *s*t*a*r*

[Sez]

I had a similar problem, and still often have to explain to my old friends from school (who I don't see very often as I live at the other end of the country now) why I have so many problems.

Have a look at the main HMS site. I'm pretty sure theres information on there about ways to explain to people. I didn't find out until my last year of school that I had HMS, so I just told people that I had problems with my knees.

[Mari]

Hi Starbug,

For you to know - we have a fault in the collagen that makes all our connective tissue - ligaments, muscle, skin,etc. Ours is stretchy and weak, so it doesn't hold the joints stable.

For you to tell your friends - One of our moderators, Az, has a great way of explaining it - other people's ligaments are like elastic bands. You can stretch them and they go back to normal again. With HMS, our ligaments are like chewing gum. You stretch them and they stay stretched, weaker, fragile. (Az is much better at explaining it!)

Don't put too much emphasis on the hypermobility part, though , because that's where the confusion arises ("Oh, I'm like that!") as 1 person in 10 is hypermobile but don't have any problems - they don't have Hypermobility Syndrome.

Mari

[Guest]

THANKS I HAVE JUST PM AZ !!!

[gen]

The EDS site do booklets for children of diffrent ages explaining many of our problems. I got copies of them for Joes school so if anyone wanted to know the resource was there , it helped a lot as it meant he could answer questions once they knew a bit not struggle to do the lot.

[Mari]

Good idea, Gen - I've got those and they are helpful.

Starbug - go to http://www.ehlers-danlos.org and there's a Publications page with the leaflets, etc., on it. (Many think that HMS is the same as Hypermobile Ehlers-Danlos Syndrome.)

Mari

[Katt]

Just in case you don't know the HMSA have a brilliant book about HMS for kids and teens. (Well i think its bril anyway ). Just contact Jay and she'll send it too you.

Katt

[Mari]

That reminds me, I also meant to tell you to go to the Teens page on this site (from the Homepage).

Mari

[nonyanomemory]

Hi starbug, I have a fifteen year old daughter with HMS and she says this -
I have a medical condition - it is called Ehlers Danlos and the reason I can't always do PE and other stuff is because it sometimes means I am in chronic pain. I look the same as anyone from the outside but inside my muscles are made differently to yours.

She has ongoing achilles tendonitis at the moment and sometimes just says because she gets annoyed with having to explain all the time - my physio says not to do PE at the moment but I'm hoping to be able to do more soon. Saying something positive at the end of explaining sometimes helps like - I do enjoy swimming though out of school.

You are not alone finding this aspect of school life hard and my daughter tries very hard not to let it get her down. She did announce the other day that even explaining to good friends is hard sometimes because they can't see pain. So I really understand. If you get left out of a lot of things I really think it would be a good idea to talk to your mum and the school and get them to organise things so that you are more included in a way that suits you. Schools are supposed to do this so it might be worth trying.
nonya

[LianneS]

The only thing I can say Star is that youre lucky (in a sense!!) that you have been diagnosed at school...

I wasnt diagnosed until college I think (cant remember that far back!!) but I often had bad knee pains and still ended up doing PE (Didnt help that my tutor was the pe teacher and was a very competitive person, I was always good at PE so she always wanted me to do it!!!

If Id been diagnosed at least I could have had a note to get me off!!!

I agree with what everyones said though, dont emphasise the hypermobility part. My hubby who hasnt got HMS for example can get his palms to the floor, I cant and dont think I ever have been able to do this...but like he said he can do it cos of his muscles stretching (or something).

Anyway, just explain that you have a condition that affects your joints and makes everyday life very difficult and painful, so PE can often be out of the question.

I dont know how bad you suffer but you may need to also explain that you can be ok some days and then other days not...

Lianne

[Guest]

*raises hand* Been there too The way I always used to explain it, since some kids at school aren't always the brightest or most caring sort, is just to simply say my body bends in ways it shouldn't. Which means when doing sports I can cause myself a lot of injory. For years I was unable to do contact sports such as ruby, football or running.

Personally though, I didn't mind too much because I wasn't much of a PE fan

In response to Lianne; I can see what you mean about being lucky but when you're a teenager it is just one more thing to deal with. I used to get laughed at when I fell over and damaged my ankles - even the time when I damaged one so badly it went black and I was off school for two weeks.

[LianneS]

Kids are cruel artisticchardon... they think people's misfortunes are something to be laughed at...I suppose at least you were able to give a reason as to why this happened to you..

I remember on so many occasions having to sit out PE because of my knee pain, but it was so difficult because the teacher never believed me as the note was from my mum and not a dr.... I finally got off it more when I was having problems with my breathing (apparently something to do with the fact that I was getting too much O2 and not enough carbon dioxide) so I was able to get a note from dr about that and just got off PE for that...

Lianne

[Sez]

I once turned my ankle leaving the school grounds, slipped, did a somersault in mid air which pulled my back and my shoulder and landed on my hip. I was in agony, but all my friends just laughed. It probably had been very funny from their point of view (this was before camera phones, so I guess I'm lucky no one was able to film it!) but I wasn't amused, especially since, instead of calling for a lift home, I put a brave face on it and hobbled all the way trying not to cry.

I wish I'd been diagnosed earlier on at school. As it was, I usually did PE when I could, but got to sit out and work on a written sports project (usually about horses) when my knees were badly swollen. We once did a whole term of trampolining, which was probably not good for my knees and ankles but because it just "twinged" when I made impact with the bed of the trampoline, I wasn't allowed to not do it. However, I did get out of sports day a couple of times (I was always on the tug of war team and went home with subluxed shoulders ) and usually got out of netball and hockey because I found running so painful. One year I was told I HAD to take part in the sprinting and cross country runs, or I'd get detention, so I just walked the course with my asthmatic friend .

I agree you should get information from both HMSA and the EDS support group - as these are information leaflets from registered organisations/charities, no one can say you're making it up. I wish I'd known about the HMSA when I was still at school - it would have made things so much easier, and I could have gotten a lift pass if I'd been able to explain that it was a permanent condition that's always there even on good days, not one that just comes and goes. I often had to walk up two flights of stairs to lessons, even when I was on crutches!

[LianneS]

My biggest problem (and I never seemed to learn) was that I was good at sports, and it seemed to be every sport, I was good at the running (short distance though) long jump, shot, and high jump so due to the fact my tutor was head of PE and very competitve, on sports days I ended up doing everything...

I never learned cos I should have made myself rubbish when we were practising for it...she wouldnt have picked me then!!

Lianne