My girlfriend has the same condition. She is quite lucky to have just some mild deformation of the skull and nothing regarding the arms or legs. We read that some people have the fibers around the hips or knees and can't walk that well. Do you have any of that?
If you're interested in talking to someone else with the syndrome, shoot me a PM. I can put the two of you in contact.
MortimerErnest173 karma
My girlfriend has the same condition. She is quite lucky to have just some mild deformation of the skull and nothing regarding the arms or legs. We read that some people have the fibers around the hips or knees and can't walk that well. Do you have any of that? If you're interested in talking to someone else with the syndrome, shoot me a PM. I can put the two of you in contact.
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