Wow, Nicole, God bless you. Where do you live? I've just found out about the
Philip J. Rock Center in Glenn Ellyn, IL for people with hearing/sight problems
and they have several people that have Sticklers that attend their program.
It's associated with the Helen Keller Center in NY and they have several other
centers around the country. My first thought was hoping you could find a
support group near you with others that have this syndrome.

I'm a foster Mom that's adopting a daughter (13 yrs old) that's just been
diagnosed. I joined this group to try to find out ways I can help her to
prepare for the future.

If you can't find a support group that exists in your area you should start one!
There has to be others, like you, who need someone they can relate and talk to.
I've dealt with a lot of kids and have found hands down the best way to cope,
learn and reduce stress is to join a support group so you don't feel so alone
and can get a healing hug when needed..

I look forward to hearing from you. Please stay in touch with this group even
if just to vent.

Nicole <angeleyes2362901@...> wrote:
I am a 26 year old mother of four who was diagnosed at age 5 but had
no idea what I was in for I am now about to have my second hip
replacement within a few months I had glaucoma surgery a week and a
half ago I have constant pain in my knees ankles and collapsed left
hip I have 4 children I can barely care for my 8 year old son has
sticklers and had to undergo eye surgery last january to reattach his
macula and retina in left eye and laser in right to repair tears and
holes in retina and his orthopedic furture looks grim my 7 yr old son
is still undiagnosed he has a unusually high palate and will be going
to the retinal specialist sometime next week my 9 mo old twins have
not yet been tested and medicaid will not pay for the genetic blood
test so I don't know what to do I have lost my zest for life and fear
for my marriage as my husband has to take care of our kids and me I
feel alot of times people think I'm making this disease up doctors
don't even understand much my genetitist is my only person besides my
family who also has it are the only support I have and I need help I
need some one to talk to who knows how this feels please help me.
Nicole Reichrath





SPONSORED LINKS
Health and wellness Health and wellness program Health wellness product
Corporate health and wellness Diet fitness health nutrition wellness Cleft lip

---------------------------------
YAHOO! GROUPS LINKS


Visit your group "sticklersyndrome" on the web.

To unsubscribe from this group, send an email to:
sticklersyndrome-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


---------------------------------





SMILE ~ It makes people wonder!
A cheerful look brings joy to the heart, and good news gives health to the
bones. Proverbs 15:30


[Non-text portions of this message have been removed]