What is Ocular Albinism?
Ocular Albinism is a rare form of birth defects only happens to once in every 18,000 babies. It is actually a genetic condition. Typically it affects eyes and hairs. A perfect normal vision requires a good amount of pigmentation in our eyes. It blocks the reflection and creates a sharper image reflect to the retina. When the pigmentation is low light reflects back causes blurry vision. It is one of the vital elements of our eyes to create perfect vision.
Retina is like a wall of a projected image. If you have a smooth wall and good dark room you get a very clear crisp sharp image. To explain what happens with them consider you are in a movie theater in a dark auditorium after movie starts playing. You get to see a clear vibrant image. Now consider the same situation with a broken hole lets sunlight in. Now the images are no longer clear or sharp. This is the same case with people with Ocular Albinism. Retina gets an image that is not sharp enough (Visual Acuity). This is still not a 100% apple to apple comparison. Their situation is far worst.
The loss of vision is not a temporary thing. It is something the person will have to deal rest of his/her life. It’s a permanent loss. If it makes it any better to those are suffering, the loss will not get worsen. Neither the person will be completely blind. Although the ability to see things may vary from person to person. Some people may have good enough vision to be lucky enough to drive. But that is not a very common scenario.
Symptoms may include
1) Crossed eye, fast eye movements(nystagmus).
2) Two eyes look in the different direction (strabismus)
3) Hair loss can happen but it is highly rare.
There are two types of albinism. When skin, hair and eyes are affected it’s known as oculocutaneous albinism. When only eyes are affected then it’s known as ocular albinism(OA). In both cases, the biggest loss is eye sight. They will most likely to get light pigmentation in Iris making their eye see through in normal indoor light. OA is x-linked factor which means it usually happens to boys only.
Babies born with this condition may get lighter skin than parents and eyes Iris may look lighter or light gray. They may look at their hands very closely all the time. They may also try to cross eye frequently as well.
Your baby will see. He/she may not have good eye sight to live a perfect normal life. Actual condition may vary person to person. Some may get good enough eye sight to be able to drive and others may be considered as legally blind.
Most of them may be very sensitive to bright lights such as after noon sun exposure. It’s not painful but very much uncomfortable.
Ask your doctor about the visual acuity. If it’s worst then 20/70 then he/she may need assistance in school.
There are some tips or tricks may help
Eye glasses will not completely help but it may give some boosts.
Tinted corning lenses to prevent sunlight exposure.
A monocular mini-telescope that can be useful for seeing distances, especially for students.
A digital camera enabled tablet may help reading books or street signs.
Always carry a smart phone with Camera and GPS enabled. It may come in handy in may scenarios.
Most will not be able to drive. Living in a city where mass transit is available would be an ideal choice or should be planned to avoid daily life commute related problems.
I will not call Albinism is a disease, it’s rather a genetic disorder. It will remain same for rest of that persons life. It will not cause other medication issues or it will not get worsen or make a person completely blind.
A suggestion to parents. I understand what you are going through or went through. I’m also in your shoes. Despite their limitations, it is very important for them to live like a normal life. You have the person to do that. You have to treat them as normal and give them the boost to live on their. They will need more strength and power to live a life. If you show them they are incapable then it will really make them weak and incapable. Make friends with other parents who also have kids with this condition and educate yourself to enjoy a better life. You will learn many things from them.
In the US, first year eye doctor visit is free so it is highly recommended to make a visit just in case if there are other things involves can be cured or improved. Either way it’s always better to take your baby to doctor if you see your baby can not focus in first 2 two months.