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Hi,
I know how ya feel..My son wasnt diognosed with sticklers til he was
15..he has lost most all sight in his left eye and has had 3 surgerys
on his right.He has had 6 surgerys since last aug.The surgerys do help
and there really isnt much option..If you dont have it done there will
be more damage.Is it detachments that you are dealing with?Thats what
my son had x2 and now dealing with glaucoma which has taken most of
his sight..I dont know if this will help you but we have found much
comfort and help from the association for the blind who will help you
in many ways.if you can contact them I recomemd it..If you would like
to talk more Iam here..email me..Best of luck,charlene


In sticklersyndrome@yahoogroups.com, "panterakenya"
<panterakenya@y...> wrote:
> and it has been identified by a retina specialist....i had my
> daughter Sherezade tested for it when she was 3 years old...the
> geneticist said that the results for Sticklers had shown
> negative...now she is going to turn 5 on November 3rd....i am very
> upset because she has lost 60% of her vision and i feel very
> frustrated that i was not aware of her having sticklers but yes
> Pierre Robin and Kniest dysplasia....i wish i would of known earlier
> so we could of have had prevented the loss of those 60%...the retina
> specialist has told me that he wants to do surgery on both of her
> eyes next month....could anyone tell me if u've had this
> surgery.....from the little that he told me...it consist on putting
> some staples.....he said that they are some risks..like everything
> does.....Sherezade has a narrow airway that complicates at times her
> breathing...so she is in need to be intubated with a
> fiberoptic....any advice or any information that u all would be able
> to share with us...we would greatly appreciate it
>
>
>
> Gabby