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Five members of my family are affected by Stickler Syndrome.The youngest is thirteen years of age , the eldest is 58 .My fifteen year old niece has recently had two hip replacements over 4 weeks.Surgery for Retina Cryotherapy has also taken place ,where the retina is frozen to prevent detachment. Cleft palate has also been an issue.

Stickler syndrome is a genetic connective tissue disorder caused by collagen defects, affecting the eyes, ears, joints, my family have had numerous joint replacements between them.

It is often diagnosed in children, with common features including severe nearsightedness (myopia), high risk of retinal detachment, hearing loss, joint pain/arthritis, and distinct facial features including cleft palate.

Thank you.

Phillipa Boyd