Rare Disease AdvocateToday my guest blogger shares her experience with Sticklers.
Written by: Monica Dunivan
I am currently recovering from my 2 retinal detachment and at the same time my brother is recovering (not too well ) from his 4th retinal detachment. My son and my brother were both born with cleft palate pierre robin syndrone- the birth of my son resulted in the genetic testing that led to the diagnosis of sticklers syndrone. We need to get help- My oldest son is 26 and already blind in one eye and his vision is very poor in his good eye, I do not want him to go blind. My 23 year old needs hearing aides and most days is in pain from arthritis- this is something that is obviously very prevalent in our family and now I have a granddaughter- I would love for her not to have to go thru the same things that we have. Please Help with research!!!