Joni My daughter Kayla is 11. My other daughter Paige is 10 & has had one
laser surgery on her right eye for retinal tears. I to have a younger daughter
Ashton who is 7 & doesn't have Stickler. We just had her tested at Childrens
Hospital in Columbus, Ohio. I am so glad. Kaylas ears are also a big problem
for us. She has tubes & is on Augmentin 500 right now for a double ear
infection. I am so sorry your husband is going through so much. I am almost
31. Have a lot of arthritis problems everywhere there is a joint. Hope his
surgeries bring him some relief.

Joni Trout <crazytrout@...> wrote: Hi to Michelle and Heather! My name
is Joni. I do not have sticklers, but my
husband, sister-in-law, mother-in-law, and youngest son do. I do have a 4
year old son that is unaffected. We too did not know what any of this was
(ie:cleft palate, the retinal detachments, joint problems) until I had my
youngest. He is now 19 months by the way. He also has prs. My husband is
having major trouble with his knees and we are looking at replacements in
the very near future. He is 34. He is also blind in one eye and has poor
vision out of the other. Both retinas detached as a child. They were able to
save one. His hearing is not the greatest. He is also looking at surgery
soon to replace the"hearing bone" in one of his ears. I am not familiar with
that surgery at all. My son is doing well at this time. He is very
nearsighted and has worn glasses since he was 2 months old. His major
problem right now is his ears.
Oh, my mother-in-law and sister-in-law are also both blind in one eye. They
are sort of in denile about the whole sticklers thing. They think I go a
little over board with all of Evan's doctors. I dissagree. Anyway, that is
another story!!
I certainly know the feeling of a hectic life full of doctors! We all do I
am sure.
I am interested to know Heather, how old is your daugther? We were told that
the risk of retinal detachment was greatest between the ages of 5 and 10.
This holds true for my husbands family. I was just wondering if it did for
yours also.
Oh and Michelle, you mentioned that you had back surgery. Did they determine
if the collapsed disc was sticklers related? My mother-in-law just had the
same thing and can not figure out how she injured herself. Although, she has
never mentioned the word sticklers to any doctor! I was kindove wondering if
it was related.
Sorry so long, Just trying to get to know you both! :)


>From: matt russell <mattnheatherr@...>
>Reply-To: sticklersyndrome@yahoogroups.com
>To: sticklersyndrome@yahoogroups.com
>Subject: Re: [Stickler Syndrome ] Hello Group
>Date: Thu, 20 Apr 2006 22:42:11 -0700 (PDT)
>
> Hi Michelle. My name is Heather. I found out only 3 years ago that I
>have Stickler Syndrome. I also am severly nearsighted & have had 10 laser
>surgeries for retinal tears. I to suffer from arthritis. I am 30 years
>old. The reason anyone even really started looking at me, is because my
>oldest 2 daughters had a celft-palate. My younger daughter also had PRS.
>My oldest daughter Kayla just had both her retinas detach in March. They
>were able to save her left eye, but she lost 90% of her vision in her
>right. Life is very busy here with all the appointments. I would love to
>hear from people going through the same thing.
>
>Michelle <michele_sliger2001@...> wrote: Hello, My name is Michelle
>and I am 21 and was diagnosed with
>Sticklers when i was 14. I was born with visual impairments (High
>Myopia, and Macular Degeneration) but the doctors didn't think it was
>related to anything else health wise until I was 14. When i was 14 i
>started having trouble with my joints and finally the doctors did all
>the tests and figured it out. Since than I have had 2 shoulder
>replacements on both shoulders, 2 back surgeries for collasped discs
>and had a soft spot on my skull removed. I am extremly interested in
>talking with others who are sharing the affects of sticklers.
>Michelle
>
>
>
>
>
>
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