By Sheena on Monday, July 03, 2000 - 08:33 am:

Is HMS supposed to affect 1 person in 5000? Then how come at least 4 of my family have it, and I also know 2 other unrelated families who have it?

By Bianca on Tuesday, July 04, 2000 - 08:07 am:

This is a question i ask myself very often.
When I tell people that I have HMS, they very often say that they are hypermobile, too.
I think there are a few explanations for your experiences.
1. There is a way to look at like: everybody who can move beyond the normal range is hypermobile. Then up to 30 % of population is hypermobile. But most of them have no HMS. These are the ones which tells me, oh I am hypermobile, too, but I have no problems. And then I show them my limps and what I can do with them and they become quiet, because they see that we don't speak from the same thing.
2. I think that HMS is a lot more common than it is diagnosed. But because HMS is very unknown- it is not yet in the German dictionnary for clinic words- it is very often not diagnosed. This are the people who are as hypermobile as I am or more. When I start to ask them about joint problems they tell me all about some joint problems like wrist problems during biking, a lot of sprained ankles, chronic feet pain, knee pain everytime, when they go down some steps, tendonitis from biking, chronic back pain.... and so on. I know seven people like this from seven diffrent families around my normal colleagues. Only one was diagnosed with HMS. But she did not know-although she is a nurse- that this is a diagnose of its own.
3. There is a dispute between scientists whether hypermobility is a genetic defect or only a variant of the normal like red or brown hair. Don't get angry about me. This theory is not from me. And when I ask my body my body tells me that it is a genetic defect.
4.It is said that most of the hypermoble people live without any problems, so they are not mentioned because they were never searchd for. I think a lot of people with HMS don't know that a lot of their problems are not normal or may be related to a syndrom. Sometimes my Achilles tendon does like hang itself somewhere in the ankle. I always thougt that the Achilles tendon of everybody would do that until I realized taht mine to that because of HMS.Or when I learnt at the nursing school taht you have to was the back of other people I was surprised and thougt okey they are old people. I never had the idea that it is normal that you cannot reach every place of your back.

By Elle Elàn on Sunday, November 19, 2000 - 12:30 pm:

HI

here in the netherlands I never heard about anyone else with HMS in the three years since I was diagnosed.I checked every medical dictionary at the library too and also found nothing. Only just now they are founding a Orginasation for HMS.(While in this country there's an orginasation for EVERYTHING)and my pt told me that in the 10 yrs as a pt I was the 6th case and only 2 others had my degree (wich isn't the worsed from what I understand).
Maybe some of us are ashamed of our pain and stiffness. I know I was, and often still am.
Only on this board for instance , I learned that it is normal not to be able to wash my back.I've really been soooo ashamed of that! I used to do all the 'man-stuff' around the house; and out of a misplaced sense of shortcoming I felt I had to chip in and do my bit of hard labour around the house and around family in spite of the pain it causede me for a long time-I dind't want to be called an 'old lady'"granny'or fat lazybones'Or as someone once called me a 'big bag of beans'
The other day I read an article by dr Graham in wich he stated that maybe we don't experience the pain in time to stop doing what we're doing.Maybe he's right.Maybe however,we just push ourselfs too hard and too long because we considder the pain as normal and don't want to quit everytime we feel pain.Is it possible that because of that attitude hms patients just don't see their doctor ( in time) ? Just a thought.
So I think you're right Bianca,It's not diagnosed because of a lack of knowledge and/or understanding about it, even by doctors.

Nevertheless: Long live the internet for in the three weeks that I know about this board I learned a lot!

By Lin on Sunday, November 19, 2000 - 03:13 pm:

i have always known i was hypermobile, but never knew it was abnormal, i know that conflicts, i just thought everyone was hypermobile sort of. i am 15. i was diagnosed with chondromalacia patella, and while doing research on that, i found hypermobility syndrome. boy am i glad i did, this needs to be more well known. I determined i had it, and told my doctor and demanded for referrals. i had been struggling with my doctor for a long time with problems in my elbows, related to hms. I was so happy and so shocked when the orthapedic surgeon came into the room, checked my joints, and said that i had hms, the first person that knew what they were doing! i am finaly getting the help i need, i am very grateful to have been determined this at a young age where i dont have to suffer like so many people. i am on painkillers daily, and am in physical therapy 2 a week to strenghten muscles to hold my joints in place. Who is Dr. Graham? i hear so much about him. I live in the states. HMS and EDS III is said to be interchangable, EDS III was proven to be carried in the genes, and an hereditary defect, and if they are interchangable just where as EDS III would be a more severe case, then it is common in familys. I also talk to people who when i say i am hypermobile, they say oh yes, they can do that too. when i ask them if they are in pain everyday, have subluxations for no reason, and cant walk without painkillers (my knee is so bad) and are in physical therapy for it, they are taken a bit back. For those who do have it, its needs to be more well known so everyone doesnt suffer. For those who dont, yet enjoy flexibility, they need no pity but should be extremely grateful. I dont want any pity either, i always thought it was cool that i could do those tricks, now i dont think so anymore. sorry, just venting. I am so glad this board is here, to talk to others who know what you feel, to be able to vent, and to learn so much. it has been so informative, i think i would still be undiagnosed and in the dark if it wasnt here. sorry if the message is realy long. Lin

By Gwen on Sunday, November 19, 2000 - 07:48 pm:

Lin, I never knew I was hypermobile until I was in my mid forties although I certainly knew I had sore joints,that clicked and cracked for no apparent reason, long before that. I'd never heard of hypermobility until I was given that diagnosis and even now my GP and orthopaedic surgeon doubt that I am. However blood tests for rheumatic fever, rheumatoid arthritis and other nasties have all come back negative and I certainly don't have osteoarthritis except in joints that have been injured so for me it is more a diagnosis of exclusion rather than anything else. The important thing for me is that it explains what I feel far more accurately than anything else that has been sugested (or implied! such as depression, hysterical personality etc.)
As for how common EDS/HMS is. I think it must be far more common than is suspected by the medical profession. In the last eight months, through sheer chance, I have come across four other people with hypermobility and pain. Our local support group is twelve families comprising about thirty affected people from a population of about 400,000 and this is only the people we know about.
If EDS/HMS is anything like the iceberg with 9/10 below the surface or unrecognised there must be about another 270 people in our district which I think works out about 1:1300. Certainly not a rarity!

By Patty on Saturday, November 25, 2000 - 12:46 am:

My daughter goes to a school of less than 700 students and only 70+ in the graduating class. Since we found out positivly about our EDS over the summer, we have found two others in the senior class, one of whom is now also diagnosed positive and the other's mother refuses to believe it could be true - my shoes for several years with my daughter. No, not a rarity!