Oculocutaneous Albinism I have oculocutaneous albinism which is an inherited disorder characterized by a reduction or complete lack of melanin pigment in the hair, skin and eyes. These conditions are caused by mutations in specific genes that are necessary for the production of melanin pigment in specialized cells called melanocytes which are found in your skin and eyes. Oculocutaneous albinism is inherited as an autosomal recessive genetic condition. I was diagnosed when I was three months old. I have low vision acuity along with nystagmus, strabismus, and photophobia. Nystagmus is the involuntary side to side eye movement; it gets worse with long strenuous tasks such as reading, working with electronic screens or tiredness. Strabismus
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If I am outdoors I have to apply sunscreen at least every hour and even then I am still susceptible to become sunburned. My hair also has no pigment causing it to be a white or yellowish color. I overcame my visual acuity by adapting to my surroundings, such as when I was in elementary school I would use an elevated clipboard and a desk lamp that would allow me to read and see the schoolwork better. It did make it difficult to get from class to class having to carry the clipboard and the desk lamp along with any textbooks and/or backpack that I needed for the next class.
My fifth grade year I became homeschooled, which made it easier to adapt. My entire curriculum was on a computer so if I was unable to see what I needed to all I would have to do is use the zoom in or out option on my computer. Memorization has been a key factor in my education; I have had to memorize a lot due to my low vision.
Advice that I would give someone in my situation would be do not let it define you. It will be a part of you and you will have to deal with it but it is not how you should define yourself. You will be picked on by some, others will ogle at you, and those very few people won’t say anything about it only for the fact they don’t want to offend
If I am outdoors I have to apply sunscreen at least every hour and even then I am still susceptible to become sunburned. My hair also has no pigment causing it to be a white or yellowish color. I overcame my visual acuity by adapting to my surroundings, such as when I was in elementary school I would use an elevated clipboard and a desk lamp that would allow me to read and see the schoolwork better. It did make it difficult to get from class to class having to carry the clipboard and the desk lamp along with any textbooks and/or backpack that I needed for the next class.
My fifth grade year I became homeschooled, which made it easier to adapt. My entire curriculum was on a computer so if I was unable to see what I needed to all I would have to do is use the zoom in or out option on my computer. Memorization has been a key factor in my education; I have had to memorize a lot due to my low vision.
Advice that I would give someone in my situation would be do not let it define you. It will be a part of you and you will have to deal with it but it is not how you should define yourself. You will be picked on by some, others will ogle at you, and those very few people won’t say anything about it only for the fact they don’t want to offend