--- In sticklersyndrome@yahoogroups.com, Nicole King
<angeleyes2362901@...> wrote:
>
> again nicole reichrath here with similar problems i would like to
share my advice and stories but due to carpal tunnell it would be
easier to get calls (352)428-0693 or (618)549-9583
angeleyes2362901@...
>
> jennaevmooney <jennaev@...> wrote: 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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> Hello, my name is Amy and we have a four month old daughter that
was diagnosed with stickler syndrome. I would really like to talk to
someone who is or has gone through this.
>
>
>
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>