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Oculocutaneous Albinism

What is Oculocutaneous Albinism?

Oculocutaneous Albinism is a rare disorder characterized by a partial or total lack of melanin pigment in the eyes, skin and hair.

 

Oculocutaneous Albinism is a rare disorder characterized by a partial or total lack of melanin pigment in the eyes, skin and hair.
Acknowledgement of Oculocutaneous Albinism has not been added yet.
7.15http://www.orpha.net
Synonyms for Oculocutaneous Albinism has not been added yet.
Cause of Oculocutaneous Albinism has not been added yet.
There are a several symptoms that affect patients with Oculocutaneous Albinism.
Name Description
Nystagmus Nystagmus
Strabismus Strabismus
Diagnosis of Oculocutaneous Albinism has not been added yet.
Diagnostic tests of Oculocutaneous Albinism has not been added yet
Treatments of Oculocutaneous Albinism has not been added yet.
Prognosis of Oculocutaneous Albinism has not been added yet.
Tips or Suggestions of Oculocutaneous Albinism has not been added yet.
References of Oculocutaneous Albinism has not been added yet.
Hello Everyone Created by Nimonic
Last updated 7 Sep 2016, 09:41 PM

Posted by Nimonic
7 Sep 2016, 09:25 PM

I have OCA2 with CAIS, Asperger's Syndrome, SMA4(Kennedy Disease), SMA3, and Vitiligo. I have a variety of other health issues primarily from injury. Such as TBI causing brain aneurysms(in past I had 3 happen) and spinal injury. Though I have also survived more than one type of cancer. Because of a mix of traits I currently look white. Well except if I wear my hair loose. Then the afro sort of shows. I tend to braid or pin back my hair though. I have strawberry blond hair and hazel eyes. I am part asian, black, and european. My father was half black and part asian. My mom was half asian and part european. Because of health problems I've had eye surgeries and other procedures. Because of implanted lenses, other surgeries, and wearing glasses I can see reasonable. Though without all that I'm nearly completely blind. Even with the implants and glasses I have to increase font sizes or wear reading glasses or craft glasses. I right now kind of wish I had computer glasses as the font as I type this is just barely visible to me. There was a time I looked more black though I was lighter black skinned. Before the eye surgeries and before cancer treatment I discovered I was having more pigment loss. After all that and treatment for burns and scar removals I look normal enough but it feels like I've lost part of my cultural identity. My first aneurism happened in Spain while I was working at an school and observatory. I later had a second one in the US and a 3rd in Canada. It caused me memory loss that at one point was quite severe. In the end I gradually got my memory back but not enough to ever work in my old field of work again.(its also been many years since I had to leave it) I also was left only speaking english. I can't speak the same languages I knew as a little girl. I recognize little bits and pieces but that's not the same think as being fluent. Before the pigment loss I was accepted in Benin as part of the black community though at the time cautious in parts of africa because of my hair color. Some places redheaded or blond blacks would be hunted over superstitious things. So I'd cover my hair. Later I could show my hair in asia but after my eye folds were gone people just thought I was latin or white. Anyone else have issues with cultural identity because of albinism or associated problems? If someone asks where I'm from or my background I do admit I'm part black but an albino people don't say much. If I say I'm part asian it's like "huh? your eyes aren't right." I tell them eye surgery but some laugh and say I look white to them. Years ago people were a bit more understanding because I was still spotty. Now I have various sized dark spots on me(arms) about 5mm long at the largest. Rest of me is light and though sunburns doesn't really tan.

Community External News Link
Title Date Link
Community Resources
Title Description Date Link
Noah

National Organization for Albinism and Hypopigmentation

03/20/2017

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Hello Everyone

Created by Nimonic | Last updated 7 Sep 2016, 09:41 PM


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