Marfan

Hypermobility Forum for people with Marfan, EDS: Marfans: Marfan
Top of pagePrevious messageNext messageBottom of pageLink to this message   By Victor on Sunday, June 04, 2000 - 01:05 pm:

Hi, everybody.
I am a new person in this area.
I am 45, and I had Hypermobile Joints all my life
with no apparent problems.
Just recently I became aware of the marfan syndrom,
and honestly, I am scared to deth, because I found
about a half of it's symptoms.
My question is very simple: is it possible to have
some of the most obvious symptoms, like sceletal, and
not to have the syndrom?
The reason I am asking is that some other major simptoms
are not just absent, they are reversed.
For example, marfans usually have eye problems at least
to a certain degree. My eyes are better than perfect,
like for 18 yours old. And my teeth are perfectly
straight, never needed braces.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Ian on Sunday, June 04, 2000 - 01:05 pm:

I have coached contortionists for many years and have had contact with hundreds from all over the world. It is possible to have very "loose" joints and never have
problems. Look at gymnasts and circus performers.

Having said that, some years ago an English girl contortionist was examined in London and experts concluded that she had EDS symptoms but not the problems.
She is now in her 50's and without problems and she used to do shoulder dislocations in her performance.

Self diagnosis is not wise. Better that you should go to a specialist and find out if you really have a problem or are simply very flexible without a problem.

Those who suffer from marfan, EDS and HMS are not simply flexible - they have big problems and are not well served by the medical profession.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Sue C on Sunday, June 04, 2000 - 01:05 pm:

I've had this issue come up in several conversations...

As best as I can tell, gymnasts don't contort. They have limber muscles. When have you ever seen a gymnast hyperextend a joint in competition? -- only during an
injury.

Also, given the lack of finger strength and laxity of wrists and other joints, how in the world can someone with hyperextending joints even DO gymnastics?

I've never been able to hold on to a bar for more than a few seconds; having joints without the normal "spring" to them makes other moves like the vault impossible
-- our fingers and wrists would be limp, rather than bounce. Not to mention the characteristic very flat feet that wouldn't fit correctly on the balance beam, which I
haven't seen in any gymnast.

This doesn't even approach the subject of dislocations, which ARE a problem for gymnasts, but are just a part of our normal lives.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Denise on Sunday, June 04, 2000 - 01:06 pm:

>>As best as I can tell, gymnasts don't contort. They have limber muscles. When have you ever seen a gymnast hyperextend a joint in competition?<<

My daughter was kicked out of every gymnastics class she ever tried to take (at least 4)starting at age 2! They said that she was waaaay tooooo limber and didn't
have enough control over her body. As a two year old her favorite position to watch TV was with her back to it, the top her head on the floor, upside down, and legs
straight. She also has amused people by being able to fall asleep with her head on her own lap or shoulder.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Barbara on Sunday, June 04, 2000 - 01:06 pm:

I agree - gymnastics is a bad thing for someone with EDS. I wasn't diagnosed until I was 21. I participated in gymnastics as a child and lacked the strength and
stability many gymnastic activities. I was prone to injury which resulted in long-term joint damage. Gymnastics and ballet only caused increased flexibility and
instability.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Dianne on Thursday, December 06, 2001 - 01:18 pm:

I also have to agree. My daughter was in competitive gymnastics and the flexibility made her very good - however her joints (especially the shoulders) made her an accident waiting to happen. One day it did on the vault - she dislocated her shoulder and came down very awkwardly injuring her back in the process.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By az on Monday, December 30, 2002 - 01:47 am:

Hi Victor although I cannot give a proper medical opinion I thought I would regale you with my story see if that gives you any help. My best friend Jay was diagnosed with Marfans as a teen. he has all the typical symptoms of Marfans... 6"1 (although was taller, but curvature of the spine shrunk him) Longer arm span than body height, slight webbing of fingers and toes, thinin of scalp (Almost bald on top before 25)Premeture aging of skin (looked 35 at 15 years of age) very skinny (cannot put weight on no matter what, averages 9 stone app 130 pounds) Broad in the hips (Like a female) Chest is convex (I think( sticks out, although most Marfanoids are opposite)Dislocated eye lenses And his Aeorta started splitting from early 20's till it erupted at 31. During the years of our friendship I also had a lot of problems that went undiagnosed till this year (HMS possible EDS 3) and we would compare symptoms and concluded that my symptoms where very similar to his, but my body features are not as pronounced as his are. My arm span is longer than my body. Instead of having premature again skin mine is the opposite and has stayed very soft, smooth and young looking (Lucky old thing :) ) My eyes are very good vision wise, but they are oddly shaped. My fingers are long and too flexible, but not very webbed as a Marfanoids would be. So what I am trying to say is that although we have many similar problems Marfans and HMS is very different, lucky for me mine doesnt appear to be life threatening Jays is. If you still have doubts then see a cardiologist. I must also add jay was actually diagnosed by an eye test, but that was early 80's and things have slightly progressed. Good luck and all
Az


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