Thanks for your reply. It is nice to know what James' condition is, so we can watch out for sight and hearing issues, but still hard not knowing what the future will bring (but I guess that's true for everyone). We just hope that James' Marshalls will not cause him too many problems in the future.
Do you have the distinctive facial features (flat nasal bridge, like my son) that usually go with Marshalls? If so, how have they changed over time. The sight, hearing, short stature, facial features and joint issues seem to be the prevalent conditions associated with Marshalls, and I just wonder how many will affect James. It looks as though James will need glasses, and I am concerned about his hearing, but he is too young to know about stature and joint issues. Only time will tell. Thanks again
for your willingness to correspond.
Deb
--- On Tue, 9/16/08, Christy Hill <care4k9@...> wrote:
From: Christy Hill <care4k9@...> Subject: RE: [MarshallSyndrome] (unknown) To: MarshallSyndrome@yahoogroups.com Date: Tuesday, September 16, 2008, 9:56 PM
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.
>
>
>
>
>
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