Welcome Deb,

This list gets very very little activity. Although people here call it
Marshall's Syndrome, I was told by National Institutes of Health that it is
Marshall-Stickler's Syndrome. That might help you learn a little ore about
connective
tissue issues. Some doctors argue that Marshall's is actually Stickler's but a
sub
category of Stickler's syndrome, other school of thought say it is just
Marshall's. I
find a lot of VERY closely related information from Stickler folks that relate
to
Marshal's.

I was diagnosed with Marshall-Stickler's in 2002 when I was 37 years
old.
I have had a retina detachment and I'm hard-of-hearing. My one eye I see out of
has
retinal issues as well. I have a little joint issues but not too bad. I have a
high
arched palate, but not a cleft palate. I do have sinus issues. When I live in an
area
with humidity, I have issues. I just moved to San Diego area 6 months ago from
St.
George, UT. What I loved about St. George was the DRY weather and was better on
my
sinuses. Here in San Diego, they have had an unusual humid weather and I have
had to
take Sudafed more often.

I wish we could get a little more activity on this list, but it just
doesn't get much. Maybe you and I can just chat :-)

Just feel fortunate that you were able to have James diagnosed at a
very
young age since I didn't know what the heck I had until 37.

Christy

> -----Original Message-----
> From: MarshallSyndrome@yahoogroups.com
> [mailto:MarshallSyndrome@yahoogroups.com] On Behalf Of
> Deborah Hatfield
> Sent: Tuesday, September 16, 2008 9:28 AM
> To: MarshallSyndrome@yahoogroups.com
> Subject: [MarshallSyndrome] (unknown)
>
> Hi: My name is Deb and my son James is 11 months old. He
> has Marshall's. I have just joined and would like to talk to
> other people and/or parents living with this condition. We
> just had James fitted for an obturator (a mouth piece to
> close off his mouth from his nasal cavity) as he has a cleft
> palate that won't get fixed for a few months yet. I'm just
> wondering what to expect in the future - there's not a lot of
> information out there, and my doctors are not very familiar
> with Marshall's. Does anyone know of a doctor who
> specializes in it? Any information would be sincerely appreciated.
>
>
>
>
>