Stickler syndrome is a genetic condition that's rare, but can cause major problems for many people who have it, including joint problems, hearing loss, cleft soft palate, even blindness. There's no cure, but doctors at Mayo Clinic are working toward managing symptoms so people with Stickler syndrome can lead full, productive lives.
I had it passed on, I have a beighton score of 9, dislocated my knees and jaw, have high myopia and was seen by Moorfields eye hospital incase of detaching retinas and to monitor changes in my vitreous jelly. I now have chronic back pain which has developed in the last 2 years. Any advice is appreciated :)
peksy86 5 months ago
Just to clarify, sticklers syndrome isn't just passed down. Even if there is no trace of the syndrome in your family history you can still develop it as it is a mutation. This could happen to anybody. If you have sticklers in your family, you are more susceptible to get it hence the 50/50 chance.
peksy86 5 months ago
I have it too. The rarest type. and no one has it either in my family in anywhere. It just means its a new dna mutation that has came in before your birth.
Samsukkaa 2 years ago
I have sticklers as well. But as far as I know, no one in my biological family has it though.
RoKkStArBoNeZ 2 years ago
I have Sticklers Syndrome and my son has Pierre Robin Syndrome. I was told they are sister syndromes but his is much worse.
nyprincess10001 3 years ago
What type is it? I have Type 2, it's the rarest type. You don't have to answer this but, how old are you?
LCORWHAT 3 years ago
me too.
baberroxy 3 years ago
I have Sticklers Syndrome.
LCORWHAT 3 years ago