Michelle

I am 28 years old and was dx'd this year with Sticklers. My daugter
has PRS also, my son just sticklers.

I have had 8 jaw surgeries, ranging from mild to total
reconstruction.My back , feet and r hip are all falling apart, and
no drs up here have any clue on how to treat ua...

We dont have eye issues, as it is type 3. We do hace short stature
and I am hearing impaired.

Nice to meet you
--- In sticklersyndrome@yahoogroups.com, matt russell
<mattnheatherr@...> wrote:
>
> 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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> >---------------------------------
> >
> >
> >
> >
> >
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> >
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