Hey! Great we have discussion here! WHOO HOOO!!!

     Yeah, I have some of the facial features of Marshall's. I have extremely
narrow
hips, very short legs, but very long fingers and I have very broad shoulders.
I'm 5'
2" but my sister who doesn't have Marshall's is short too. But her proportions
of her
body are normal.

         My lower jaw is small and under developed, but lucky developed enough I
never
had any real problems other than impacted teeth that needed to be removed, but
as far
as chewing or function, never had a problem.

Christy

Vickie,

         I'm one of the fortunate ones with Marshall's that do not have severe
joint
issues. I would say I didn't get achy joints or soreness issues until I was
about 33
years old. I do get stiff now, but not what I read from folks who have
Stickler's. I
feel that I'm very fortunate. I'm not as bad off as others with this syndrome.
The
older I get now (I'm now 43) the more I noticed stiffer joints. I also noticed
that
damper climates are more of an issue.

         My biggest issue are my eyes.

Christy

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.
>
>
>
>
>

Hey gang...anyone out there? Just kind of seeing who is out there since this
list
is soooooo quiet. Hope to chit chat a little bit with you out there who have
Marshall's syndrome!

     Christy

Wow! A message from this list!!!!

     I'm from Southern California too and have been living in the San Diego area
for 4 months. I'm a native of California, but grew up in Calabasas and then my
family later moved to Ventura county. Then I became a seasonal park ranger and
bounced around the whole country, then got a full-time job here in San Diego.

      I just wonder if I should reintroduce myself since there is really no
action on this list and people probably have long forgotten. I was diagnosed at
the National Institutes of Health (NIH) back in 2002 (when I was 37) with what
they call Marshall-Stickler's Syndrome. I guess it is just Marshals, but I
understand doctors debate over that.

        I wish we could get some discussion here! So quiet, we get lime a message
every three months.

Christy

Hi, I was going through my old email address' inbox and I came across
your email. I also live in SoCal and was diagnosed when I was 18months
old by Dr. Marilyn Jones (Radys Children's Hospital in San Diego) I'm
now 23 and doing well. I hope Lalo is doing great still! Mary Ann Crall
--- In MarshallSyndrome@yahoogroups.com, "aranda.michel"
<aranda.michel@...> wrote:
>
> Hello my name is Michel.I am from Southern California,and i'm the
> mother of three month old Lalo who has been diagnosed with Marshall
> Syndrome. After months of feeling overwhelmed with unanswered
> questions and very little support, I am excited and grateful to have
> come upon a community i can share my experiences with, reach out to
> for help, advice, as well as celebrate in the joy of raising our
> beautiful children...being new to the group i will naturally be
> checking in pretty often, and look forward to hearing from one and
> all!
>

Mandy,

congratulations on the success with the surgery and speech!

Wow, who would have thought that Marshalls was that rare that your son
would be the only diagnosed case.

Good luck with the recuperation! How old is your son again?

Christy

Mandy,

          congratulations on the success with the surgery and speech!

           Wow, who would have thought that Marshalls was that rare that your son
would be the only diagnosed case.

            Good luck with the recuperation! How old is your son again?

Christy

Hello everyone!  My son, Dean had to have his palate completely taken
apart and redone last week (wednesday) and is doing VERY well!!  He
still talks a bit nasally, but nothing near how it used to be.  He had
the surgery done on last wednesday and we got to come home on the next
day.  I went back to work on tuesday and have him at my preschool with
me (I am a teacher).  I notice already that his speech is a lot better
when he is conversing with his friends.  A lot of compensations he was
making because of the short palate need to be unlearned, BUT I am
noticing that playing all day long with his friends seems to be working
better than ANY speech therapy he has had!! :)  Also, because we were
hospitalized for surgery, the genetics team was able get Dean's testing
finally approved through the insurance company.  If the results are
positive for Marshall's syndrome (which I am certain they will be) Dean
will be the only diagnosed case in Florida.  Very exciting stuff for
our genetics team.  I'm just so glad to finally be getting answers!

Mandy

Hi Michel,

        Glad your computer is up and running so you can participate again! I
would love to get a "little" activity going here. How is Lalo doing these days?

--
Christy Hill
A'Mickey
***************
http://home.att.net/~care4k9

Hi Mandy,

       You say that Dean doesn't see sign language well, but what about tactile
sign language? Years ago I went to the Deaf-Blind conference and it was amazing
the different ways of communicating. It is SOOOO crucial to get that language
development at a very early age...which I'm sure you know, but more crucial when
they are younger than older. Young I mean infant. Five years old is consdiered
old in early language development :-)

       SOrry about the catarcts...I had cataract surgery when I was 13 and then
the other eye when I was 33. Amazing of the technology for cataracts 20 years
later.....it is wonderful that I still see 11 years after the surgery with the
high myopia and retinal deterioration. My eye is hanging in there...I only see
out of one eye!

         I hope Dean's cataract surgery is GREAT success and he does see 20/20, I
can only see about 20/60.
--
Christy Hill
A'Mickey
***************
So. Utah (soon moving to San diego
area)
IAABC-SAC Assoc. #143
APDT #67371 (second number)
IAADP
CGC Evaluator
http://home.att.net/~care4k9

Hi everyone, I haven't been here in a LONG time, sorry.  Anyways, my
son "little" Dean has prs and marshall's syndrome...he is 5 and in
kindergarten.  We are having a second palate repair soon to clear up
his speech.  We just went to the opthamologist and he found cataracts
in both eyes.  The doctor did say that when the cataracts are removed
that Dean's vision will be close to 20/20...this is very exciting news
as Dean's vision is currently at 2100/20!  Dean also wears hearing
aides.  The result of the unclear speech, partial deafness and not
being able to see to sign is that Dean will have to repeat
kindergarten this year.  This isn't so bad since his 5th b-day was on
the first day of school and his new speech therapist (at school) was
wonderful to contact his a therapist who specializes in children with
clefts!!  We go to gainseville next thursday and hopefully will know
when his cleft surgery is.

Mandy, mommy to Dean

Hi Michel,

         WELCOME! Wow, I didn't get diagnosed with Marhsall's until I was 36
years old. What advantages you have to know from early years to know how to help
your child rather than going through the frustrating maze of having a child with
a condition and you don't know where to start!

         I've been taught that Marshall's syndrome is really a sub catagory of
Stickler's...some will argue, but it was the National Institutes of Health that
told me that it is "Marshalls-Sticklers' Syndrome." This is a connective tissue
condition. I consider myself rather mild, but I have a high cleft palate,
hard-of-hearing and had many years of eye problems. I lost my vision in my right
eye at 17, it deteriorated over the years and last year July I had my right eye
removed due to the pressure building up and the pain. IT was the best thing
since the prosthesis looks WAY better than my eye. People can't tell, it is a
glorious thing!

         I do get joint achyness and soreness, but if I lay off the processed and
human made products, then I do pretty well. There is still so much to learn
about Marhsall's and I just love it when I read about someone here because there
are not many of us. THis list is rather quiet and wish we had more activity.
Maybe you are the spark to get it going!

         I"m now 43 and have done well, I have gotten a B. S. degree in zoology,
have had very exciting jobs from being a veterinary technician, to working in
wildlife to being a park ranger to getting a teaching credential to teaching dog
training classes to now going to work in a federal investigative job. Lalo has
the ability just like many other folks.

          How did you determine at such a young age that Lalo had Marshall's???

Christy

Hello my name is Michel.I am from Southern California,and i'm the
mother of three month old Lalo who has been diagnosed with Marshall
Syndrome. After months of feeling overwhelmed with unanswered
questions and very little support, I am excited and grateful to have
come upon a community i can share my experiences with, reach out to
for help, advice, as well as celebrate in the joy of raising our
beautiful children...being new to the group i will naturally be
checking in pretty often, and look forward to hearing from one and
all!

Hi Mary Ann,

          Thanks for the URL. Interesting that they say that the skull is too
small for the brain.....when I have a large skull for a woman. My  hat size is 7
1/4. However, there is no family history of anyone else having this in my
family. On the Stickler list, they can easily find that their parents or
children have the syndrome.

            I found this link helpful...

http://www.healthline.com/galecontent/marshall-syndrome

             This describes me very well, I have eye issues, hearing loss and
yeah, my nose is turned up. Then the article states:

"In the years following Dr. Marshall's discovery, some physicians have argued
that Marshall syndrome is actually a subset of Stickler syndrome,"

              Ok...so I think I found my answer here :-)

Christy

Hi Mel,

        Stickler's Syndrome is a connective tissue syndrome. I can say that I
don't have loss of hair. Heh, kind of the opposite. My skin does keloid.

         Christy

Hi Everyone

When I went to NYC to see Dr. Shanske (peds genetics), he evaluated
me, my sister and nephew. He said the difference between sticklers and
marshall syndrome is some skin/hair defects. Like for example, my
sister and I have significant loss of hair that started in our teens.
He then went on to say that Marshall syndrome is a type of ectodermal
dysplasia. He said Marshall syndrome is very rare as he only knew of
about 7-8 families with it. They took some of my blood when i was
there to use for research when and if they do decide to research on
marshall syndrome. Hope this helps.
Mel

My grandson was diagnosed about 3 years ago with
Marshall/Sticklers Syndrome.  He's only 6 years old.
He lost his eyesight a year ago and has undergone 4
surgeries so far to try and regain some of his sight.
  The doctor said he's able to see some kind of light
when they examined my grandson but we are not sure how
much.  Please feel free to contact me with any
questions.  I am copying my daughter on this
email....Thank you so much for the information.
There's so little out there on this terrible disease.
God Bless
--- camare88 <camare88@...> wrote:

> When I googled Marshall syndrome a while back (which
> is how I found
> this group) I found a great article on Marshall
> Syndrome, that also
> talks a little bit about Stickler Syndrome, it might
> be the start of
> answering your question about Marshall-Stickler.
> Hope that helps.
>
http://www.healthline.com/galecontent/marshall-syndrome
>  - Mary Ann Crall
> --- In MarshallSyndrome@yahoogroups.com, "Christy
> Hill" <care4k9@...>
> wrote:
> >
> >     What I need to clear up is that when I was at
> the National
> Institute of
> > Health, They diagnosed me as Marshall-Stickler's
> Syndrome. That the
> Marshall
> > part was a sub category of the Stickler's. So is
> Marshall's Syndrome
> different
> > from Marshall-Sticklers' Syndrome? OR the same,
> but in Marshall-
> Stickler's
> > Syndrome, they have the Stickler issues combined
> with the Marshall.
> >
> >       Anyone know?
> >
> > Christy
> >
>
>
>


Luz

When I googled Marshall syndrome a while back (which is how I found
this group) I found a great article on Marshall Syndrome, that also
talks a little bit about Stickler Syndrome, it might be the start of
answering your question about Marshall-Stickler. Hope that helps.
http://www.healthline.com/galecontent/marshall-syndrome
  - Mary Ann Crall
--- In MarshallSyndrome@yahoogroups.com, "Christy Hill" <care4k9@...>
wrote:
>
>     What I need to clear up is that when I was at the National
Institute of
> Health, They diagnosed me as Marshall-Stickler's Syndrome. That the
Marshall
> part was a sub category of the Stickler's. So is Marshall's Syndrome
different
> from Marshall-Sticklers' Syndrome? OR the same, but in Marshall-
Stickler's
> Syndrome, they have the Stickler issues combined with the Marshall.
>
>       Anyone know?
>
> Christy
>

What I need to clear up is that when I was at the National Institute of
Health, They diagnosed me as Marshall-Stickler's Syndrome. That the Marshall
part was a sub category of the Stickler's. So is Marshall's Syndrome different
from Marshall-Sticklers' Syndrome? OR the same, but in Marshall-Stickler's
Syndrome, they have the Stickler issues combined with the Marshall.

       Anyone know?

Christy

Hi - I just joined this group. Sorry I didn't respond sooner, but I
was on vacation. I'm a 22 year old girl who was diagnosed with
Marshall Syndrome in 1985. I've had lots of craniofacial, ear and eye
surgeries as a kid related to the symptoms of Marshall Syndrome.
However, I just graduated from college and am pursuing a career as a
Child Life Specialist (therapeutic play) in  a Children's Hospital
and lead a fairly normal life. I'd love to answer any questions or be
a resource for someone else or to be a part of some group
discussions. Feel free to email me anytime, Sincerely, Mary Ann Crall
--- In MarshallSyndrome@yahoogroups.com, "Vickie L. Specht"
<vickie.specht@...> wrote:
>
> Yes, I am still here . . .
>
>
>
> From: MarshallSyndrome@yahoogroups.com
[mailto:MarshallSyndrome@yahoogroups.com] On Behalf Of Christy Hill
> Sent: Saturday, July 28, 2007 1:21 PM
> To: MarshallSyndrome@yahoogroups.com
> Subject: [MarshallSyndrome] Anyone Out There???
>
>
>
> Hey folks!
>
> Looking at the archives it appears that this list hasn't had much
> activity for awhile. Anyone still out there??? I just recently
joined and would
> like to get a little action going here :-)
>
> Christy
>

Hey folks!

        Looking at the archives it appears that this list hasn't had much
activity for awhile. Anyone still out there??? I just recently joined and would
like to get a little action going here :-)

Christy

Hi everyone. I was contacted by a family that has a child with Marshall and
they looking for a doctor to help there family with Marshall Syndrome. I
don't know of anyone but wondered if any of you did.

Tony Sizemore

www.tsizemore.dns2go.com

"Could we change our attitude, we should not only see life differently, but
life itself would come to be different. Life would undergo a change of
appearance because we ourselves had undergone a change of attitude."

Katherine Mansfield

1888-1923, Writer