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Author Topic: Teenager with HMS  (Read 895 times)

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Offline droptoast

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Teenager with HMS
« on: July 01, 2005, 07:55:15 PM »
My daughter is 17 years old and was recently diagnosed with HMS.  I have taken her to an orthopedic Dr. and it was the Rhematolgist who diagnosed her.  She is alreay in considerable pain with her knees.  the Rhem Dr. said that exercise was her only hope and to watch her weight.  Is there nothing else I can do for her.  I am so concerned that at this early age she will be crippled with pain by the time she is 30...Any suggestions or addtional Dr.'s I should take her to

Offline WICowgirl

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Re: Teenager with HMS
« Reply #1 on: July 01, 2005, 08:07:46 PM »
Drop,

I think you should take her to get a second opinion with an OS specialized in knees! I have had crippling pains since I was 13 and it is way worse now (I will be 30 next month).  Don't let her suffer if she don't have to and if there is something that can be fixed fix it before it can't be! You have found the best site for any information you need!

Good Luck
Heather H
29 yo from Wisconsin
2 Bad Knees
LR + MR + poss. TTT on right knee July 13th

Offline Heather M.

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Re: Teenager with HMS
« Reply #2 on: July 01, 2005, 09:24:12 PM »
I think your best hope for new treatments and things to improve her quality of life is to join an online or in-person HMS support group.  These can make a different in your life, just like this board helps so many people with knee issues!

You may want to visit a geneticist to find out which type of HMS your daughter has, because there are literally dozens of different syndromes, and it really is necessary to know which she has to know the best way to treat her.

There is a section dealing with HMS further down on this bulletin board--it's most of historical interest to you because there are not a lot of active posters.  That's why I'd recommend finding an online support group just for HMS (usually broken down by type--Marfan's Syndrome, Ehlers-Danlos (EDS--think I spelled it wrong!), and so forth.

http://www.ednf.org/
http://www.ehlers-danlos.org/
http://www.marfan.org/nmf/index.jsp
http://www.io.com/~cortese/marfan/
http://www.hypermobility.org/
http://www.myfibrosite.com/users/dayna/hypermobilitysyndrome.html


Hope this information helps.

Heather
« Last Edit: July 01, 2005, 09:28:22 PM by Heather M. »
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
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