does anyone know where u can get funds for surgeries on clef lip'n
palate, cuz i need a few more but don't have insurance and ss won't
help. if u can help plz email me at lil_grace17@...
                      thank u
felecia

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i used these guys to make my bills alot more manageable, it was free so what the
hell, why not?

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If you dont want to be part of this group, you can leave by mailing
sticklersyndrome-unsubscribe@yahoogroups.com

Hello all, I have a few odd, bizarre and yet interesting questions....we had a
dr appt today, you can only imagine. Anyways, Skyler had 2appts today one for
his eyes(a 6month check up routine for SS patients) and one for audiology. Well
Skylers eyes are getting "better" as in I think he can see ok, but not good
enough. He has familiarized him self to his surroundings, and adjusted to
everything. His presures are good 14-17ish He is a fighter, he doesnt like
things in his eyes :)  His nerves look great and all else is good, just he cant
see I think he threw out these numbers 20/400 and 20/600 is that possible?? Also
we almost got aways with no diolating and we were going to do it in
December...but we werent that lucky. The dr then got too thinking that if
everything was well lthen why couldnt he see? Do any of your children have a
sort of translution to their eyes? I have noticed since skyler was very little
that his eyes get "glassy" and reddish like a dogs eye. I mentioned this too his
eye dr in November(this particular dc was gone and another was filling in) but
that dr didnt notice anything....i thought I was crazy. But the dr looked at
Skyler and started talking about his macular reflex isnt there??? and then
stated that We may have a genetic disorder....whats one more right? hehe. But is
Albinosim....I dont think that is possible....but I actually am not sure with
wat the symptoms are, and is tat really possible? I think he is crazy...or I am
who knows.but he wants to do this "test" on skyler to determin why his macular
reflex isnt okay or something and that will determin the albino thing...I dont
know. I figured if I asked youall some one would be bound to know and have heard
of something like this. HELP PLEASE :) Oh and his audiology appt went
ok....nothing really exciting. Talk to youall later.

Casie mommy to Skyler, PRS, Stickler Syndrome, trach, gtube, repaired cleft
palate repaired hypospadious, hypotonia, glaucoma....one big happy boy!

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

I think everyone should share their photos that way we can put a
face to the name. Just an idea.

funny what gems you find looking through your spambox, this site has very cheap
meds, all kinds, check it out

http://pilllqgskw.badlink.net

If you dont want to be part of this group, you can leave by mailing
sticklersyndrome-unsubscribe@yahoogroups.com

Hi all,
Just got back from NH..Son had 6th surgery on his eyes..All is well
so far but he has lost almost all sight in the left due to glaucoma
and the pressure being so high..Got to baby the right and keep it
good..Its nice to come on here and read about others experiances with
the disease..Best of wishes to all..Charl

Hi Barb, I am a member of SSSG but unfortunatly not a very active one.  I will
check out the gene site.  Take care Em



sheapc <no_reply@yahoogroups.com> wrote: Hi Emma, different type of collagen in
the skin, so no link to
Sticklers.  The body has 12 different types of collagen in it and
Sticklers affects only Type 2.  One important thing to remember is
that just because you have one thing it doesn't mean that it the
cause of other things, or that you can't have something else as
well.

Geneclinics has a great review of Stickler syndrome. (geneclinics.org)
Are you a member of SSSG?

Barb in Montreal

--- In sticklersyndrome@yahoogroups.com, "emmatwyman"
<emmatwyman@y...> wrote:
> Hi My name is Em and I come from Kent, England, and I am 32. I was
> diagnosed as a Sticky person about 25 years ago.  Have had detached
> retina and lost sight in my right eye, and have had lense removed
in
> left eye. My legs don't work so well (you know that wobbly feeling
> you get and you brain just won't talk your legs) so have to use a
> wheelchair sometimes.
>
> I would like to know if anyone else has found that there hair is
> getting thin with age?  Mine is and I have tried to think it
through
> logically, break down of collegen is why we have our problems,
> collegen breaks down, collegen makes skin elastic, which would make
> skin less strong, which would possibly make hair fall out quicker
> than normal.  Would anyone agree or have any experience they can
> share.
>
> Its great to find a place where people know what its like to have
> sticklers, thanks to everyone.
>
> Em


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a m

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

Hi Emma, different type of collagen in the skin, so no link to
Sticklers.  The body has 12 different types of collagen in it and
Sticklers affects only Type 2.  One important thing to remember is
that just because you have one thing it doesn't mean that it the
cause of other things, or that you can't have something else as
well.

Geneclinics has a great review of Stickler syndrome. (geneclinics.org)
Are you a member of SSSG?

Barb in Montreal

--- In sticklersyndrome@yahoogroups.com, "emmatwyman"
<emmatwyman@y...> wrote:
> Hi My name is Em and I come from Kent, England, and I am 32. I was
> diagnosed as a Sticky person about 25 years ago.  Have had detached
> retina and lost sight in my right eye, and have had lense removed
in
> left eye. My legs don't work so well (you know that wobbly feeling
> you get and you brain just won't talk your legs) so have to use a
> wheelchair sometimes.
>
> I would like to know if anyone else has found that there hair is
> getting thin with age?  Mine is and I have tried to think it
through
> logically, break down of collegen is why we have our problems,
> collegen breaks down, collegen makes skin elastic, which would make
> skin less strong, which would possibly make hair fall out quicker
> than normal.  Would anyone agree or have any experience they can
> share.
>
> Its great to find a place where people know what its like to have
> sticklers, thanks to everyone.
>
> Em

Wow!! That is so amazing!  She is so cute!!  Congratulations!!

Barb in Montreal

--- In sticklersyndrome@yahoogroups.com, "Tony Sizemore"
<tsizemore@n...> wrote:
> Hello everyone I just wanted to drop a quick note on the board to
let you
> know Mac got her prosthetic eye yesterday. It is AMAZING!!!!!! stop
in if
> you like and take a look at some of the new pictures.
> http://www.tsizemore.dns2go.com/Mackenzie/Pictures/June%
202004/index.html
>
>  Tony Sizemore
> www.tsizemore.dns2go.com
>
> The definition of a "Red Neck" is:
> "The glorious absence of sophistication, be it for a moment or a
life time."
> Jeff Foxworthy

Your right, it looks amazing!  I have had mine now for 18yrs now and I have
never had a problem and it really was the best thing I could have done, best
wishes. Em

Tony Sizemore <tsizemore@...> wrote:Hello everyone I just wanted to drop a
quick note on the board to let you
know Mac got her prosthetic eye yesterday. It is AMAZING!!!!!! stop in if
you like and take a look at some of the new pictures.
http://www.tsizemore.dns2go.com/Mackenzie/Pictures/June%202004/index.html

Tony Sizemore
www.tsizemore.dns2go.com

The definition of a “Red Neck” is:
“The glorious absence of sophistication, be it for a moment or a life time.”
Jeff Foxworthy


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

Hello everyone I just wanted to drop a quick note on the board to let you
know Mac got her prosthetic eye yesterday. It is AMAZING!!!!!! stop in if
you like and take a look at some of the new pictures.
http://www.tsizemore.dns2go.com/Mackenzie/Pictures/June%202004/index.html

  Tony Sizemore
www.tsizemore.dns2go.com

The definition of a “Red Neck” is:
“The glorious absence of sophistication, be it for a moment or a life time.”
Jeff Foxworthy

Hi My name is Em and I come from Kent, England, and I am 32. I was
diagnosed as a Sticky person about 25 years ago.  Have had detached
retina and lost sight in my right eye, and have had lense removed in
left eye. My legs don't work so well (you know that wobbly feeling
you get and you brain just won't talk your legs) so have to use a
wheelchair sometimes.

I would like to know if anyone else has found that there hair is
getting thin with age?  Mine is and I have tried to think it through
logically, break down of collegen is why we have our problems,
collegen breaks down, collegen makes skin elastic, which would make
skin less strong, which would possibly make hair fall out quicker
than normal.  Would anyone agree or have any experience they can
share.

Its great to find a place where people know what its like to have
sticklers, thanks to everyone.

Em

Hi Deb, I have a 12 year old son that has gone through the same eye
problems as your daughter.  Ty's had 2 detachments in his left eye.
After the first his sight returned really well, but not after the
second.  Now (it's been 5 years) he can see light, colours and
movement, but no detail at all.  After his first detachment, our
retina surgeon recommended preventative surgery for Ty.  We went
ahead and had a scleral buckle put on his good eye and also some
cryosurgery to reinforce some weak spots on the retina.  Happily, 5
years later, though he sees the floaters and flashes, his retina has
remained firmly in place and his vision is stable in that eye.  Ask
your doctor about preventative surgery - if he won't do it, find one
that will.  I don't know where you are, but if you contact Pat at the
Stickler group (www.sticklers.org) she may be able to put you in
contact with someone in your region.

In your previous message you mentioned about the conference - we are
going, (we've only missed one)  If there is any possibility at all of
you or any of your family going, it is so worth it!  I'm not sure yet
where the next one will be, I think we're voting on it at the conf.
(poss. either Denver or Orlando)

The info out there about Stickler's and especially the eye issues
certainly is scary, but by researching it, finding out as much as you
can, you are ensuring that you are ready to be able to make an
informed decision and will be able to advocate for your family in
their best interests.  Unfortunately many doctors are unfamiliar with
Sticklers, or have very outdated information.  It's not their fault,
there's so many different disorders out there that there is no way
they could possibly be current in everything, especially something
like Sticklers.  If you can find a doctor that is willing to work
with and listen to you and to learn, then that is half the battle.
That's why it is so important for people with Stickler's to do their
own research and then be able to discuss it openly with their doctor
and not rely solely upon the doctor's personal experience with this
type of disorder.

Well, now that I've rambled on forever about this, I hope that things
go well for your daughter, and your family.  Take care,

Barb

hi, it's been almost a month since my daughter (19) laura's eye
surgery to reattach the retina and her vision in that eye has not
gotten any better. her dr said that right now is about as good as
it's going to get. She's also saying that her other eye has more
floaters now, so i'm concerned about that. the dr said that because
the retina detatched in one eye, the other is soon to follow. Once
again I have been looking up as much info as i can online, and
unfortunatly all it does is scare me for my girls, and any children
they might have. I know that my girls have had it "easier" than alot
of sticklers kids, katie ( my youngest) has pierre rabin and had to
have her tongue adhered to her bottom lip from birth until she was a
year old, her father had had the same surgery. They have some mild
learning disabilities, katie's recently lost some of her hearing in
one ear, and now laura with her eye problems. It seems like as my
girls get older, that's when the sticklers associated problems are
starting. I'm just scared and so frustrated that i can't help my
girls,tht all this is going to happen and i can't stop it for them.
laura is saying that she wants to go see the ocean and disneyland
again while she can still see, and it breaks my heart that she says
that, she's 19, she shouldnt be having to say that.
thanx for listening, i'm just a mom who's worried about her girls.

hi, there will be a sticklers syndrome conference on July 9, 10 & 11
in Illinois. Those interested should look up Sticklers Involved
People, which is a website devoted to info about sticklers syndrome.
I cannot attend the conference but if anyone else does, would love to
hear from them.

I was really far into debt.
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I could not seem to get ahead no matter how hard I tried.
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Maputo, Mozambique
Thank You

Hi all,
Here we go again..This poor boy has been there and back since last
august..this is his 6th surgey..this time is for glaucoma in the left
eye...the Dr.has put the surgery off so long that he has lost all
sight in the eye due to muscle damage..Other drs. arnt too happy with
him after they refered him to this "speaialist" and he waited too
long...Wish I knew better but you put your trust in them not
knowing.We are off to Dartmouth hosp. in NH...Hope ya all have better
luck with your Drs...Wish ya well

Hi, I haven't been on lately due to trouble with Tyler and his new
arthritis.  I just wanted to let everyone know about the conference
coming up soon in Chicago.  It is a great learning weekend for anyone
who has Sticklers.  Details can be found on www.sticklers.org.  This
is the 8th conference and looks like there will be lots of people
there!  There are some great doctors lined up to speak about lots of
Stickler issues and what we get most out of the conference is the
chance to connect with other families.  If you're close by Chicago,
or can get there, really consider going!  You won't regret it.

Barb, mom to Tyler (12)

Both of my daughters, 17 and 19 have sticklers syndrome, so does
their father and his oldest daughter. Except for my 19 year old
daughter, the other 3 were also born with cleft palates, all with
pierre rabin syndrome. I have a 21 year old son who does not have
sticklers syndrome or a cleft palate. My 19 year old also has
congenital cataracts, and a retinal detachment in her right eye, she
just had surgery 3 weeks ago to correct it, but the dr says she
probably will not regain much sight and that she will have to have
recurring surgeries. my 17 year old has some hearing loss in her left
ear, she will not regain that. the girls' father has had 9 knee
surgeries, because of osteo-arthritis in both knees, his first
surgery was when he was 32. I have tried to find out as much as I can
about sticklers syndrome, since my youngest daughter was born and
they told us she had it, I have been very frustrated by the small
amount of info i have been able to find out through the years, and
have found that i sometimes seem to have more info then any of the
dr's we've gone to have.  I have read that Sticklers Syndrome is one
of the most underdiagnosed syndromes there is, and i can believe
that. Any info that i can gather, would be greatly appreciated, so
that i can help my girls or other people with the information, also
my grandchildren that i hope to have one day because they will
probably be born with it also. I hope to share my info with others
affected by this, so feel free to e-mail me and i will help as much
as i can.

--- In sticklersyndrome@yahoogroups.com, jamie COX
<llegallyblonde29@y...> wrote:
> i have a cleft palate along with middle/inner ear problems i havent
lost hearing yet except for very high tones, i also am nearsighted
but not severely i found a paper from when i was 5 saying i could
have probable PRS/i have PRS and that i could have stickler's and i
need to be tested ever year but my mom never takes me, the paper was
the first i had heard of it and i can not find any other documents so
i dont no if i have sticklers or not i went online and researched it
and my knees and ankles have been bothering me alot lately plus i
also fit some of ther other symptoms but its not like im dying and
some of the stickler's pages dont fit me at all and others fit me
exactly i dont want to confront my mom but how likely is it that i
have stickler's?
>
>
> ---------------------------------
> Do you Yahoo!?
> Friends.  Fun. Try the all-new Yahoo! Messenger
>
> [Non-text portions of this message have been removed]

hi, it sounds like u do have sticklers syndrome, both of my daughters
have it, one was born with a cleft palate, with pierre rabin
syndrome, my other daughter has sticklers only. Sticklers syndrome is
a connective tissue disorder, affecting joints, hearing and eyesight.
the pain in your knees and ankles could be osteo-arthritis, you
should probably get in to see a dr for a diagnosis. your eyesight and
hearing can definitely be affected also, one of my daughters retina's
just detatched ( she's 19 ) and she's probably lost most of the
vision in that eye even tho she had surgery to reattach it. she also
was born with congenital cataracts. my other daughter has some
hearing loss, she's 17. I would definitely recommend going to the dr
and telling them that u were diagnosed with sticklers syndrome, and
have yourself thoroughly checked out. good luck!

Hi
Even thought I don't have any this syndrome I am interested in this.
If any member would send me more info so I can post the info on
www.oncleft.com . Also moderator or owner of this board please email
I have a proposition to help you guys.
Thanks

Hi
I was born with cleft lip palate. I am software and web developer. I
would like you to provide FREE forum, Live Chat gallery etc for
Stickler Syndrome. Or if you need any other help email me. Also I
can setup a group website for you group with your own forum etc for
free!
The reason I am providing free forum its because I want to create
awarness about facial differences like cleft lip palate etc.
You can email me or visit my website @ http://www.oncleft.com

Thanks
Rick

thats strange i have clef lip'n palate, and inner ear problems, also
nearsighted. i would ask ur mom about it and confront her, cuz u could get help
4 that. i'm only 18 but i understand how u feel, ask her.
                                                         sincerely felecia

jamie COX <llegallyblonde29@...> wrote:
i have a cleft palate along with middle/inner ear problems i havent lost hearing
yet except for very high tones, i also am nearsighted but not severely i found a
paper from when i was 5 saying i could have probable PRS/i have PRS and that i
could have stickler's and i need to be tested ever year but my mom never takes
me, the paper was the first i had heard of it and i can not find any other
documents so i dont no if i have sticklers or not i went online and researched
it and my knees and ankles have been bothering me alot lately plus i also fit
some of ther other symptoms but its not like im dying and some of the stickler's
pages dont fit me at all and others fit me exactly i dont want to confront my
mom but how likely is it that i have stickler's?


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


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

i have a cleft palate along with middle/inner ear problems i havent lost hearing
yet except for very high tones, i also am nearsighted but not severely i found a
paper from when i was 5 saying i could have probable PRS/i have PRS and that i
could have stickler's and i need to be tested ever year but my mom never takes
me, the paper was the first i had heard of it and i can not find any other
documents so i dont no if i have sticklers or not i went online and researched
it and my knees and ankles have been bothering me alot lately plus i also fit
some of ther other symptoms but its not like im dying and some of the stickler's
pages dont fit me at all and others fit me exactly i dont want to confront my
mom but how likely is it that i have stickler's?


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

Both my kids have sticklers syndrome my son had the cleft palate but
my daughter didn't. I was told by the genetics doctors there are 2
types of sticklers. Also there is a 50% 50% chance each child I have
w/ my husband will have it. Here is a website for those who don't
know about it www.sticklers.org

-Hi..Yes the cleft palate is a symptom of sticklers..My son dosent
have it but he has the retna detachments and has had 5 surgerys since
august..I wish you luck with your child.-- In
sticklersyndrome@yahoogroups.com, "Casie Caughlin" <caughlin3@s...>
wrote:
> Lately many people have been asking where the PRS and SS came from
in my family...and how we didnt know until Skyler was born (WHO KNOWS
right?) But I know that I had a cleft palate only and my big brother
did too...and did my birht mother. My brother and I are from
different dads. And thats as far as it goes. My Aunt, had a palate
that needed to be shortened...is that a symptom of Sticklers? I dont
think it is but I cant explain where it all came from beyond my
mother who was a middle child of 4 and NO one else had an issue like
her but my aunt with the longer palate. just a curiousity
question...you know it killed the cat :) Talk to you all later Casie
mom to skyler 20months prs ss trach gtube repaired palate repaired
hypospadious
>
> [Non-text portions of this message have been removed]

--Hi I feel for you being the Mom of a child with sticklers also.My
son has had 5 surgerys since august and has more to go.All of his
problems so far are in his eyes.He is in danger of loosing his left
if we cant get the pressure under control.I wanted to let you know
what I have found for help with some of the bills that come along
that insurance did not help us with..I found an agency called
children with special health needs..Being in Vt. Iam not sure if they
are in all states or not but they are great..Help with hotel
stays,milage,and anything that insurance wont cover.I wish the best
for you and your family.                                           -
In sticklersyndrome@yahoogroups.com, "sarasmom101596"
<sarasmom101596@y...> wrote:
> Hi, I'm the mom of a 7 year old recently diagnosed with Stickler
> Syndrome.  She was diagnosed at birth with Pierre Robin Sequence
and
> has had a couple of cleft palate surgeries and ear tubes, etc.  I
> tumbled to Stickler because of her other symptoms.  Doctors could
> never give me any definitive answers.  However, I am having a
> difficult time trying to figure out how to corral all specialties
> into one group and get a doctor to coordinate the whole mess.  She
> has glasses because of severe myopia and we are continually
watching
> for detached retinas.  Because of the looseness in her joints, she
> has trouble walking and running. Being in first grade though, she
> does get teased a lot about the way she runs. She has moderate-
severe
> hearing loss in her right ear and we are in the process of getting
> hearing aids.  I feel like I'm overcome with details and am not
sure
> where to turn all the time.  Also, because of the size of her
mouth,
> due to both Pierre Robin and Sticklers, she has dental problems.
We
> are having a hard time trying to get insurance to cover any of
this,
> because it is not a medical expense.  I feel her need for removal
of
> teeth because of her short jaw and braces is a direct result of
both
> Syndromes.  Has anybody ever had any dealings with this aspect?

Lately many people have been asking where the PRS and SS came from in my
family...and how we didnt know until Skyler was born (WHO KNOWS right?) But I
know that I had a cleft palate only and my big brother did too...and did my
birht mother. My brother and I are from different dads. And thats as far as it
goes. My Aunt, had a palate that needed to be shortened...is that a symptom of
Sticklers? I dont think it is but I cant explain where it all came from beyond
my mother who was a middle child of 4 and NO one else had an issue like her but
my aunt with the longer palate. just a curiousity question...you know it killed
the cat :) Talk to you all later Casie mom to skyler 20months prs ss trach gtube
repaired palate repaired hypospadious

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

Thanks Melanie.  We live in K.C. and all her care so far has been at Children's
Mercy Hospital.  They're a great place to go, but there are so many specialties
involved, it gets kind of confusing!  We've only known about Stickler since
November, and we have so far addressed the sight and the hearing.  We know
orthopaedics is next, but haven't progressed that far yet.  Thanks for the info!
-- Megan

Melanie <Meljbodin@...> wrote:Where about are you from?  One place that i
would recommend is
Shriners Hospitals and Clinics if you are having any problems with
insurance.. They specialize in orthopedic (bone) conditions in
children-and im sure they would be more than happy to see your
daughter.  There is no need to have insurance- Shriners offers free
health care to kids with orthopedic conditions, and if you have
transportation issues, they can also drive you there and pick you
up.  The one thing that is needed is a "referral" , which i believe
you can do yourself.  I can check into it more for you if you would
like, but i do know theres a website.. i believe it is
www.shrinershq.org, if that doesnt work, just do a search for
shriners hospital.




--- In sticklersyndrome@yahoogroups.com, "sarasmom101596"
<sarasmom101596@y...> wrote:
> Hi, I'm the mom of a 7 year old recently diagnosed with Stickler
> Syndrome.  She was diagnosed at birth with Pierre Robin Sequence
and
> has had a couple of cleft palate surgeries and ear tubes, etc.  I
> tumbled to Stickler because of her other symptoms.  Doctors could
> never give me any definitive answers.  However, I am having a
> difficult time trying to figure out how to corral all specialties
> into one group and get a doctor to coordinate the whole mess.  She
> has glasses because of severe myopia and we are continually
watching
> for detached retinas.  Because of the looseness in her joints, she
> has trouble walking and running. Being in first grade though, she
> does get teased a lot about the way she runs. She has moderate-
severe
> hearing loss in her right ear and we are in the process of getting
> hearing aids.  I feel like I'm overcome with details and am not
sure
> where to turn all the time.  Also, because of the size of her
mouth,
> due to both Pierre Robin and Sticklers, she has dental problems.
We
> are having a hard time trying to get insurance to cover any of
this,
> because it is not a medical expense.  I feel her need for removal
of
> teeth because of her short jaw and braces is a direct result of
both
> Syndromes.  Has anybody ever had any dealings with this aspect?



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