Stickler Syndrome

Stickler syndrome affects many parts of the body, therefore children should be followed by a team of specialists according to each child's individual needs.

Because of the eye problems associated with Stickler syndrome, all infants and children should be evaluated and followed on a regular basis by an ophthalmologist, or eye doctor. We recommend that your child be evaluated carefully for cataracts and glaucoma as well as early signs of retinal detachment, or tearing of the tissue at the back of the eye. Retinal detachment can lead to blindness if not treated. Because of the risk of retinal detachment, your child may be advised to avoid contact sports.

Babies born with a cleft palate are unable to suck properly, and will need to be evaluated soon after birth to develop a feeding plan, usually involving a special kind of nipple and bottle. Sometime between 9 and 12 months of age, they will need surgery to correct the cleft palate so they can learn to speak normally. These children will also need to be checked regularly for problems with the middle ear, which can result in conductive (bone) hearing loss and progressive high-tone nerve hearing loss. In addition, they should be assessed regularly for progress in speech and language development, dental development and jaw growth.

Infants born with clubfoot should be seen by a pediatric orthopedist, a doctor specializing in bone disorders. Treatment for a clubfoot may include surgery. All children with Stickler syndrome should also be checked for scoliosis, or abnormal curvature of the spine. More severe cases of scoliosis can be treated with a brace that slows or stops the curvature of the spine as the child grows, or with surgery.

Later in life, the bone problems associated with Stickler syndrome may result in arthritis. Those who develop arthritis may need to take pain medication and avoid high-impact sports and exercise; some may eventually need joint replacement surgery.

Reviewed by health care specialists at UCSF Benioff Children's Hospital.

Related Information

UCSF Clinics & Centers

Craniofacial Center
1825 Fourth St., Fifth Floor, 5C
San Francisco, CA 94158
Phone: (415) 476-2271
Fax: (415) 476-9513
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