Stickler Syndrome UK
This charity provides information and support for people affected by Stickler Syndrome
Stickler Syndrome is a progressive connective tissue disorder which can cause a cleft palate and Pierre Robin Sequence.
What is Stickler Syndrome?
Stickler Syndrome is a progressive connective tissue disorder. There are a number of different symptoms which make up the syndrome.
It is named after Gunnar B. Stickler who defined the condition.
It’s estimated that one in 10,000 people are affected, though some studies put it as high as three in 10,000.
How does Stickler Syndrome happen?
It is usually passed from parent to child. If a parent has this condition, there is a 50% chance of them passing it on.
In some cases, it happens without either parent being affected.
Sometimes, a parent will only find out that they themselves have Stickler Syndrome when their child is diagnosed.
Symptoms of Stickler Syndrome can include a cleft palate or Pierre Robin Sequence. If the other symptoms aren’t as obvious, the diagnosis may just be for cleft palate or PRS, and not Stickler Syndrome.
How does Stickler Syndrome affect people?
Symptoms, and how severely a person is affected, can vary from patient to patient, even within a family, and can be difficult to diagnose.
This section lists common symptoms of Stickler Syndrome
This section lists common symptoms of Stickler Syndrome
- Flat face, small nose with little or no nasal bridge – this usually improves as children grow up
- Cleft palate
- Pierre Robin Sequence
- Possible hearing loss
- Glue ear in childhood linked to cleft palate
- Myopia (short sightedness)
- Risk of retinal detachment
- Cataracts
- Glaucoma
- Joints can be stiff or over-flexible
- Osteoarthritis is common in later life
- Mitral valve prolapse (a problem with the heart to do with valves)
- Scoliosis (curvature of the spine)
- Some learning difficulties may be experienced because of sight and hearing
Support for Stickler Syndrome
CLAPA Parent Supporters
Some CLAPA Parent Supporters have children with Stickler Syndrome and can share their experiences with you.
CLAPA Peer Supporters
Some CLAPA Peer Supporters have Stickler Syndrome and can share their experiences with you.