Monday, March 21, 2011

Ocularcutaneous albinism

Last Tuesday we took Amy to the opthamalogist. Our eye doctor in Kuna had suggested a couple of years ago that Amy may have a type of albinism that affects your eyes. I mentioned it to her pediatrician at her checkup last fall and she thought that it would be a good idea to have her looked at by a specialist before giving her that label her whole life.

So we took her to see the pediatric opthamalogist in town. She confirmed to us that Amy has Ocularcutaneous albinism. This type of albinism affects your eyes, hair and skin. She has a mild case of it. Many times they have nystagmus (eyes that jerk back and forth), eyes that look red from slits in the irises, very poor vision, and no pigment in the hair or skin. Amy has gold hair (like Rapunzel as she says), creamy white skin, no nystagmus, blue eyes and fair vision. She will most likely never have sharp vision because a part of her eyes that brings the sharpness to vision was not fully developed. The doctor said that if you were going to have albinism then having someone like Amy would be the way to go since it is mild. She will also have to be very careful of being in the sun and will have to where sun screen. (Really, that is not a surprise.) Also she is sensitive to light, but she uses transition lenses so that seems to help.

She is still our beautiful Amy. I can't help but think there are probably a lot of people out there with this and don't even know it.