By JAS on Sunday, June 04, 2000 - 01:18 pm:

I am confused -- a little. Are Marfans and EDS related somehow? I have always been super flexible in my hands and I can do the finger tricks that they say only
Marfans people can do and I have long fingers. I suspect my grandfater had Marfans, he had that tall, thin look and died young.

I've always felt geeky, because I am sort of tall-ish and skinny and my fingertips hang down to the middle of my thigh. My arms were always so long and skinny, we
had to make a sleeveless blouse in Jr. High and I begged the teacher to let me make mine with sleeves, but I couldn't bring myself to tell her why. My legs are long,
especially my thighs.

I have the pectus excavatum, real bad, that comes with Marfans and at the time of surgery my doctor said I didn't have the typical heart problem in Marfans, although
I have two murmurs.

I have stretchy skin, but not overly and loose joints, but cannot bend backwards at all -- just forwards. If I run across the street at the crosswalk, I have to be careful
becasue my knees are loose and can catch and I will tumble down. It is hard to explain, but it has always happened.

So Marfans or EDS or somewhere in between???

Is anyone like me? I don't consider myself bad off or else I am fooling myself. I put pain out of my mind so much and hide my problems, that I don't know how
much pain I am in. I guess it just feels normal for me.

Sorry about rambling on, but this has been on my mind lately.

Jas

By Ian on Sunday, June 04, 2000 - 01:19 pm:

Hi,

You might find this URL interesting

http://www.hmsa.freeserve.co.uk/hotlist.htm#cat1

Ian

By Sue C on Sunday, June 04, 2000 - 01:20 pm:

Marfans, EDS, and HMS are related. Large hands with long fingers is a typical sign of Marfans. Stretchy skin is typical of some types of EDS, but NOT all types --
this is often overlooked by doctors.

I would suggest that you seek a proper diagnosis from a medical professional, such as a geneticist.

As you've probably read, those of us with HMS or EDS vary in symptoms and severity.

By Barbara on Sunday, June 04, 2000 - 01:20 pm:

The following text is copied from the link below.


CONNECTIVE TISSUE: Part II - Histology, Dr. Douglas Cooper at http://www.sacs.ucsf.edu/home/cooper/Anat118/ConnTiss/conntiss2.htm#ClinCorrel

By Andrea on Tuesday, July 04, 2000 - 04:53 pm:

Dear Jas

I just got up to see how far down my findertips reach... Yes, middle of thigh is about right! I have HMS/EDS III but Marfan has been eliminated (no heart problems). I am 5'10'' tall and have an arm span to match (actually, that's 6') and I had reached my height at 13 weighing a ridiculous 7 1/2 stone! Ridiculous was how I was mostly described, or I was asked to eat more as I would probably otherwise fall off my bones... No, seriously, joking aside, I think you need to insist that you are told what is wrong with you. And the one with the pain and it being part of you won't do! I think you need exercise, probably slowly introduced by a good physiotherapist. Have you tried something like massage to relieve the pain? Be very careful with pain killers as they can wreck your stomach. I might be awfully mistaken but you sound quite young, so if you tackle these problems now you will "heal" faster. As you know, ther is no "cure" for any of these conditions. But that does not exclude healing.

Keep posting if it's still on your mind. - Andrea

By Michelle on Sunday, March 03, 2002 - 10:41 am:

Jas

This is all very new to me about the Marfans Syndrome and please excuse me for being so ignorant on the subject, but most of my siblings[we're talking 8 out of 10 children] may have a few to alot of the symptoms of this syndrome. I am or was 6' tall. Due to back problems I have shrunk some but my wingspan is 4 3/4" longer than my height and I have had the pain for years. I've always been thought to be a hypocondriac because of all the problems with various parts of my body and I simply tell people...until you walk a mile in my shoes and feel what I personally feel that you have no room to judge me nor tell me how I do or don't feel. Sometimes people just don't care to educate themselves because maybe to them its a case of what I don't know won't hurt me. I'm learning that that isn't true. It can kill you if you don't take precautionary measures to control it or at least deal with it. For me, finding out about this condition has answered sooo many questions on so many things throughout the years. The only reason our family did find out about it is because of one of my sisters who has been having some testing on her 7mos. old son to find out what is wrong with him. To say the least it has been very interesting and educational.

Michelle

By Michelle on Sunday, March 03, 2002 - 10:41 am:

Jas

This is all very new to me about the Marfans Syndrome and please excuse me for being so ignorant on the subject, but most of my siblings[we're talking 8 out of 10 children] may have a few to alot of the symptoms of this syndrome. I am or was 6' tall. Due to back problems I have shrunk some but my wingspan is 4 3/4" longer than my height and I have had the pain for years. I've always been thought to be a hypocondriac because of all the problems with various parts of my body and I simply tell people...until you walk a mile in my shoes and feel what I personally feel that you have no room to judge me nor tell me how I do or don't feel. Sometimes people just don't care to educate themselves because maybe to them its a case of what I don't know won't hurt me. I'm learning that that isn't true. It can kill you if you don't take precautionary measures to control it or at least deal with it. For me, finding out about this condition has answered sooo many questions on so many things throughout the years. The only reason our family did find out about it is because of one of my sisters who has been having some testing on her 7mos. old son to find out what is wrong with him. To say the least it has been very interesting and educational.

Michelle

By Linda on Sunday, March 03, 2002 - 12:54 pm:

Thanks for your insights Michele! I have had numerous Doctors tell me that it s not suppose to hurt when something dislocates. Or ask me to dislocate something to prove that I have EDS or Marfans. It's pretty scary whats out there!!! It's also frustrating to look so normal and have society look down on me just because my problems are not readily visible. I'm even struggling with feeling guilty about not having a clear cut disabilty or illness. It almost seems/ feels like our illness is not really considered a disability or illness because of peoples lack of knowledge about it. Anyone have any ideas on what kind of perspective to take on this matter? Thanks for any help!

By Sharon on Sunday, March 03, 2002 - 04:20 pm:

Linda,
I under stand about the looking normal but being disabled you might like to take a look at this web site http://www.tertius.net.au/id/ it is about "invisable" disabilities and can help with how to cope and tell others etc.
Hope this helps
Sharon

By Amy Reddish on Thursday, April 01, 2004 - 02:35 am:

Can I please take this opportunity to introudce myself. I am the mother of an ll yr old girl LOUISE. Last July she was diagnosed with marfan syndrome. She underwent a heart scan which was supposed to be used as a base line. This proved normal. She also underwent eye examinations having had a wobble for some time. This was only once observed as it doesnt happen at any particular time. In Nov of 2003 she was seen by a Genetisist who told me Louise had Marfans Habitus. She would still have to continue with heart and eye examinations as a precatution and would been seen when she was l3 and again at l5. Since then she has had another appt this week with a Rhumatologist. He has not stated that she is hypermobile to the extreme. I have always known this side of things due to my children and myself having hypermobile joints, so i expected that being said. What i didnt expect was being told she wouldnt need heart and eyes checking in the futur. Marfans was again mentioned that she showed some characterists of it but because eyes and heart scans appeared ok a definite diagnosis couldnt be made. Since July of last year her whole body is racked with pain hips, hands, legs, neck, top of the spine, shoulders, and feet. It seems to have really took hold of most of her joints in such a short time. Her shoulders seem to be dislocating according to the last consultant. We are somewhat confused and obviously upset that we cannot seem to get a definate diagnosis. Are we alone and can anyone shed light on whats happening. Sorry to go on but my husband and i are of the opinion we should get another opinion from a different hospital. What is your views.

Thanking you for your time in reading this.

A worried parent Amy