Dear Crystal,

Yes I believe it is rare, I have never heard of it before and is very
interesting.

Do you live in the UK?

You might want to visit www.stickler.org and contact Wendy Huges as she may know
more about this.

Sticklers is very common in my family, from my grandfather to his two daughters
to me and my brother and our children. My two boys have sight and hearing
problems. they have glasses and aids. I too have glasses but believe my hearing
isnt that bad. I do have joint problems rather bad now though and Im only 29, I
am on (MST) morphine to control my pain.

The cleft palate doesnt run in our family, but for some reason we should of had
it but didnt.

My brother also has a 1 month old baby girl, they still dont know if she has the
syndrome or not. But if she has it will be the same as it is for the rest of my
family. but only me and my mothers sister have the really painful arthritis.

If your in the UK or not Id still advise you speak to Wendy about this as she
may have all the answers you are looking for.

All the best for you and your family,

Kind Regards

Jody

--- On Mon, 20/7/09, calientecrystal <calientecrystal@...> wrote:

From: calientecrystal <calientecrystal@...>
Subject: [Stickler Syndrome ] blake
To: sticklersyndrome@yahoogroups.com
Date: Monday, 20 July, 2009, 1:40 AM






 





Hi my name is crystal, I have a three month old with
PRSincluding a soft palate cleft and Marshall syndrome with an overlapping of
stickler 2,I see that no one has posted in awhile so I hope you are still all
checkin in every once in awhile! Blake has severe hearing loss and will be
getting a sedated abr to confirm and tubes put in on the 27th of july, He also
will be receiveing his glasses this week.I saw that marshall syndrome may lead
to short stature has that been the case for anyone? He has enlarged joints as
well as some things going on with the vertabra, I was told that the overlapping
of the two syndromes is rare is that true? in info would be great!please share
your experinces!! ! Thank you,crystal































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