Aperts Syndrome or Crainofacial?

Question

Does anyone know people with Aperts or any other Crainofacial defects? Aperts is extremely rare, and I have it, only not so severe. My face looks normal, but my fingers, elbows, and toes are fused. Only one in eight hundred thousand births are born with it. Do you know anyone with it?

Answer 1

No, I don't know anyone who suffers from either condition.

Answer 2

I have a niece with a crainofacial condition, and a family friend, has a daughter with goldenhar syndrome.



My niece has had to injure many operations to stop the build up of pressure on the brain, and to correct some of the facial features, especially the wide set eyes. The friends daughter has a slightly asymmetrical face, but has not needed to have surgery.



Both girls have gentle natures, but have found it fairly hard at school.

Answer 3

My daughter was born with a cleft lip/palate (no syndromes involved). She's not even 5 yet and has had 7 surgeries so far. She's a beauty, always has been, btw. ;)



I've heard of Apert's Syndrome.

Answer 4

My daughter was born with Goldenhars syndrome. It is a very mild case but all of the minor disabilities rolled into one caused a lot of problems. I can send you a pic of her if you'd like, you can hardly tell if you don't know what you are looking for.