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Re: [Stickler Syndrome ] Re: Introduction   Message List  
Reply | Forward Message #96 of 810 |
Re: [Stickler Syndrome ] Re: Introduction

There is no real "test" for Marshall. We saw Dr. Day ,genetics, who now works
with Dr. Salyer here in Dallas. Dr. Salyer was my husbands surgeon but never
had a diagnosis other than sub-mucus cleft palate, and mid-facial exclusion.
Dr. Day saw our oldest daughter and that was when we first heard of Marshall
Syndrome. He told us it was close to Sticklers so much so that some people who
were told they had Sticklers actually had Marshall. He took our family history
and also examined Stephen and found that the traits and facial features looked
like Marshall. At the second visits about 7 months later he confirmed the
diagnosis. We did have some x-rays done looking for the bone abnormalities that
come with it and they were found.

They all have a cleft palate, no lip is involved. They have only soft tissue in
the nose and cheeks. Stephen is much shorter and stalkier then his younger
brother. They have sever myopia and Stephen has had cataracts. Aaron appears
to have sever hearing loss, they did an ABR at his palate repair but he had lots
of fluid on his ears so they did not get a good read.

I am a member of CleftAdcovate.org. We are the featured family for June feel
free to go and read our stories. My Mother-in-law also wrote Stephen's. This
might help you understand what we have delt with when it comes to Marshall.

http://www.cleftadvocate.org

I have found this site invaluable in the last few months. As we are dealing
with insurance issues, since Stephen was laid off and working contract now, we
are now on COBRA.
If you have any more questions ask. I will answer the best I can.

Kay aka mom2three
Wife to Stephen smcp unrepaired
Ashlyn 12/2/97 tcp repaired
Jesalayn 8/5/01 nca
Aaron 10/2/02 bcp repaired

www.geocities.com/mom2three@...


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Mon Jun 2, 2003 11:02 pm

a_mom2three
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Message #96 of 810 |
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Welcome! My husband is Stephen who has Marshall Syndrome. In turn 2 of my children do too. Ashlyn is 5 and Aaron 8 months. Kay aka mom2three Wife to Stephen...
Kay aka mom2three
a_mom2three
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Jun 2, 2003
6:07 pm

Hi Kay- Can you tell me more about how your family is affected by marshall syndrome? Are all the symptoms like stickler syndrome? Did you get tested for...
Melanie
melaniejbodin
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Jun 2, 2003
10:01 pm

There is no real "test" for Marshall. We saw Dr. Day ,genetics, who now works with Dr. Salyer here in Dallas. Dr. Salyer was my husbands surgeon but never...
Kay aka mom2three
a_mom2three
Offline Send Email
Jun 2, 2003
11:00 pm
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