You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.

This one is about: Pierre Robin, Juvenile Arthritis, Stickler Comments


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A parent writes:

I would be interested if any of the other children here on CT with PRS get JRA or other forms of Juvenile Arthritis. (Not trying to beg trouble)

Hi My son, age 7, diagnosed at birth with Stickler Syndrome and Pierre Robin Sequence, is beginning to show symptoms of the early onset degenerative joint disease (osteoarthritis), which is considered to be the most consistent hallmark feature of Stickler Syndrome. My son's father and grandfather did not have any definite symptoms until they were in their forties. For the past few months, my son complains nearly every day about leg stiffness in the morning or after sitting for long periods, and he also complains nearly every evening about joint pain in his hips, knees, ankles, shoulders, or wrists, and at times, refuses to put weight on the affected joint. I don't see any evidence of swelling, redness or heat in the joints. Jordan is very active during the day and puts a lot of energy into his physical play at school recess and during gym. I've talked to his pediatrician about these pains before, but he believes they are "growing pains", I'm not so sure, so I am presently trying to get him in to see a pediatric rhuematologist for a second opinion and a baseline exam.

Stickler Syndrome is a genetic progressive condition which affects the body's collagen, which forms the major part of connective tissue in the body. Wendy Hughes in her book, "Stickler, the Elusive Syndrome", states:

"If the wrong collagen units are used (during development in utero), then this may result in faulty shaped bones. In the head, this can cause the two halves of the palate not to fuse together, causing a cleft palate, a flat face with a small jaw, a small nose and little or no nasal bridge. Collagen is also found in the cartilage, which covers the bone ends of joints. In the eye it is found in the sclera, cornea and vitreous humor. Therefore these are the areas in which those affected can expect problems."

There are also several types of Stickler Syndrome, in which, the eye involvement appears to be a little different. Stickler Involved People Support Group (SIP) has information about free genetic testing for the different types of Stickler Syndrome.


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