Have your say...

Do you want to tell your story?  Do you have something you need to get off your chest? Or do you want to share something that has really helped you.  Just e-mail us and we'll do the rest..... 

I found out i had HMS about two months ago.

My knees started to give way when I ran and hurt a lot. My mum took me to the doctors and they said I had damaged cartliges and that it would go away, that was about 9 months ago and they have started to get worse. But now i know that it was because of my HMS.

Now I cannot do any gym at school and I have a lift key as I can no longer use the stairs.

It's had having HMS as a kid beacause while all your friends are out running about and having a laugh you can't as it's too sore.

Also kids automatically assume that if thier knees are a bit sore they have HMS which can be a nuisance. and some teachers treat you as though you are disabled and cant walk.

Rachel Thomson (Age 13 form Glasgow)

Thomas writes...

My name is Thomas, I am 10 years old, I have HMS and Autism.  Is there anyone out there like me? - if so please e-mail me (Email address on file).

Anonymous writes....<

Hello everyone.  I am a 16 year old with 98% of my body hypermobile.  Its not always fun having this because some people don't understand.  Just 'cause you can't see what's wrong with me people think I am fine.  In all I am not.  It's very hard to walk the mall or even do fun things with my friends.  Sometimes when I drive I have problems.  It's not fun at all.  Why do I hurt like this so bad I can't even walk sometimes.  I have it really bad in both my hips so when I go to the dance clubs I have a lot of trouble and people look at me funny.  This hurts too.  I just want to tell some of the other girls out there that think its cool that sometimes its really not and I cry most of the time because sometimes I can't do half of what really teens are doing.  I just wish the best for the girls out there with it.

Heather (age 13) writes...

For many years I have had health problems, feeling weak and my muscles ached most of the time.  I did have a lot of energy and even went to dancing classes.  I loved going out for bike rides and going to the shops with my mum and dad.  All that stopped three years ago when the weakness worsened and the pain in my legs became unbearable.  Painkillers did not work and I had to go to bed and rest.  The only thing that helped was when my mum applied 'Deep Heat' to my legs.  My mum and dad saw many doctors over these three years, non of whom gave any answers.  Some suggested that we were making it up.  In May 1999 mum asked for a second opinion away from our area and we were sent to Manchester Children's Hospital.  we saw two doctors who diagnosed that I had Hypermobility Syndrome.  At last I knew that someone believed me.  

In June 1999, I was lucky to be seen by Professor Grahame who was in Glasgow for a conference.  Also there was Dr Ferrell of Glasgow Royal.  They were both nice to me and my mum which made a change.

I am now getting physiotherapy to help me, but as I am in my first year at High School, it is quite hard.  I still do not have any energy and even going to the shops is difficult and leaves me feeling tired.  Some days I can feel quite ill.  I just want to be like my friends doing everyday things.  I worry at times about what kind of job I will do when I leave school as I know there are many jobs I could not manage.

Hopefully with the physiotherapy I will gain some strength but I do find the exercises hard to do every day on top of homework.

Sometimes I get a bit down.

Adam writes...

I am writing to tell you about my Hypermobility Syndrome.

I have had hypermobility Syndrome since I was born and I am now 9 and 3/4.  I have got Hypermobility Syndrome from the neck down.

I have been to several hospitals in Sussex and Surrey and ended up at Great Ormond Street Hospital.  I had to go every month at one time and had hydro and physiotherapy.  I am still having physiotherapy.

I have recently started going to a new clinic in Crawley with Dr Murray and Dr Lewis.

I have been told that I am a lot better and that with the right treatment I will have no problems in my later life.  My outlook is good and I will be able to lead a normal life.

I play rugby and bowl for Crawley.  My sport has helped and I am no different from all my friends.  I am happy and hope this will help other children.

Ashley writes...

Hello, my name is Ashley and I am 15 years old. I found out about my HMS aproximently 7 months ago. Most of my body is hyper mobile and no one knew why my joints were dislocating and why i was always in so much pain. The few months before i found out about my HMS...I was in a wheelchair.. and I was stuck like that for christmas.. I couldn't go to school and i had never felt so much pain in m life.. but when I was finaly able to see a pediactric specialist in another city, she disgnosed me with HMS. Many people do not believe that i actually am in pain most of the time and like to tell people that i am just making it all up...along with all my other medical problems... nothing is easy for me to do anymore and no one seems to understand...for all you other young girls out there like me... dont let anything anyone says put you down! They might say things like " your not normal" and stuff like that...but what is normal anyway?

Amy writes ...

Hi I'm Amy and I am 15 years old and I have had HMS for about 5 years. It all started with a pain in my left knee and I had surgery and physiotherapy but nothing changed and from then on it has progressed and most of my body is hypermobile and most of my joints easily dislocate. This year I started my GCSE's and took PE because I was part of the school Hockey, rounder and tennis teams and I really enjoyed sport but my HMS has got so bad I have been forced to give it all up and I am now spending most of my time on crutches. I was gutted! And unfortunately I have got to wait for my bones to stop growing before I have corrective operations. Although HMS has totally changed my life I have always had loads of support from my family, friends and especially my boyfriend. And the HMSA website has helped me loads and now I know I am not alone and lots of people know what I am going through. Thank you!

Katie writes ...

Hi I am Katie, I am ten years old and have just been told that I have hms at GOSH. I was born with club feet and a dislocated left hip as well. When I was younger my consultant, Mr Coneybeare , told my Mum that I was the most loose jointed child he had ever seen. Everyone thought that my problems were because of my feet and hip but they are not. I have had lots of operations to sort this out but my feet and legs still look strange and I get bullied at school a lot. My hms makes me clumsy and I get bullied because of that as well. I am always falling over and hurting myself. I sometimes get upset when people bully me but I try not to.

I have just started doing physio and am starting at a dance club next week where other people with hms go. I teach judo on a Saturday morning but this scares my Mum as she thinks I might hurt myself.

Jenny writes...

Hi. Im jenny and am 14. I found out that i had hms about 3 or 4 years ago. I have always been able to partially dislocate my shoulders i.e the come half out of the socket if i am carrying anything heavy in my hands. It was mentioned taht i con dislocate my shoulders on a visit to a physio for an anckle injury, and that is when i iscovered that i had hms. I also have it in my wrists, fingers and ankles. My knees often hurt so i am wondering if i have it in them, although i cannot bend then backwards. Although my story is not nearly so bad as anybody elses i just thought i would mention it. All my friends think that i am making all of the pain up, and when i injure mysef in sport the pain is so much. But of course im not. HMS is not an ilness / syndrom that you hear of very much. I deffinately hadent heard of it until i found out what it was.

Elizabeth writes...

My name is Elizabeth and im 17 years old. I have been diagnosed with hypermobility syndrome for more than a year now, but my parents noticed the signs when I was much younger. I was only recently diagnosed with this condition because of a dislocation of my kneecap. Having hypermobility syndrome isnt fun for some of us and more people should be made aware of it. I find it hard to try and explain my condition to people and explain why I dont want to run or why I dont want to go in large crowds of people, just incase anything bad happens like it has before. I wish people could see the fear that some of us feel because we dont want to be in pain but they dont seem to understand most of the time. It would be nice if this condition was better known to people so that maybe they could understand why sometimes we feel pains in your joints and a simple paracetamol wont work.

Kali writes...

Hi My name is Kaili I'm 14 yeas old. I was recently diagnoed with HMS this past year. When I was 7 I was a figure skater and started to have ankle problems I would wake up every morning with my foot turned to the side so bad you could see the bottom of my foot, We went to doctors and no one knew why it did that. So they decided to wrap it. It took two men to wrap my foot, I left the tape on for about 3 weeks and it turned the minute I took it off. about a year and a half later it didn't happen anymore. then it stated coming and going. Then just last year I started to have more ankle and even some knee problems. We finally made it into Childrens hospital in Seattle and they said it was HMS. Then went to Schreiners Hosp. a few mos after to confirm it. It was said. I have HMS. Now I have more pain I recently have it in my hips, knees, ankles, and wrist. I am a competive Eventer, and every time I ride I start hurting. Jumping is the worst to my knees. So I don't do that as much, mostly Dressage. and even now that is starting to get even harder. I am now doing PT and I hope to get stronger I don't want to give up the stuff I love.

Sophie writes...

Hi, i'm 14. I was diagnossed with HMS when i was about 8/9. I've always had really bad pains with it. It drives me crazy, because i'm such a fun loving girl. I'm so sporty, i am restricked to certain amounts of sport each week and it's not how much i'd like, when ever i leave the house i have to have my knee's in bandages .. it sucks because they hurt my legs .. and if my wrist start playing up i have to wear wrist splints, none of my teachers know what it is, i get in alot of trouble because they think i'm faking it ... i really don't like talking about it thoug, i hate people knowing, they treat you different. This diease affects me jsut as much mentally as physically ... it gets me really upset ..

Havea writes...

hi everyone!!!

im havea and i am 13 i have been diagonsed with hms for about 4 months now.i started having pains in my lower back then about a month or so it spread all over my body i even started pains in my head! i cant even count how may times my mum took me to the gp and them saying it will go in a week! but it didnt.my mum started taking me to hospital about 2 times a week and begging them to tell us what was wrong with me. but no answers. my whole family and all the docters i have seen have thought i was making it all up to avoid school and that made me soo upset.then after about a year i was reffered to great ormad street hospital and they diagnosed me with benign joint hypermobility and now im doing physio. im relieved i know whats wrong with me because i have missed months of school and really want to go back full time but i know i wont manage it all. i really want to promote awarness of this because i dont want people to go through what i have gone through with people thinking you have made it all up.