What are the Limitations of Albinism?

A person with albinism has very few physical limitations. They need to protect their eyes from UV sun exposure due to the absence of color in the iris. These people need to make sure they go to annual eye exams to correct any visual problems. They must also protect their skin from sun exposure, and go for annual skin examinations to screen for cancer or precancerous skin problems. Children with albinism may need large print textbooks, and if needed, to sit up at the front of the classroom. As far as emotional limitations, people with albinism need to learn coping strategies and have a support system in place to help them work through difficult experiences. Professional counseling may be necessary to help develop coping skills related to issues of albinism.

What is Everyday Life Like? & What is the Quality of Life?

Everyday life for a person with albinism is greatly affected by society's attitudes. The influence that society has on each individual varies according to their experiences. Albinism can lead to emotional difficulties because a person can feel isolated and not participate fully in his or her daily activities. Children with albinism can be especially targeted by other children who don't understand the disability. This can lead to bullying and further isolation. This is why it's so important for parent and teachers to help educate other children in the schools.

How can Albinism be Treated?

Treatment varies on how severe the disorder is, because it is a genetic disorder, interventions are limited and there aren't any cures at this time. The goal of treatment is to relieve symptoms which include the following:

• Reducing exposure to sun with sunscreen and clothing
• Protecting eyes from sun with UV coated sunglasses
• Annual eye examinations and prescription lenses as needed to correct vision problems
• Annual skin examinations to screen for cancer precancerious lesions or moles

Adjustments to the classroom environment that may help the school aged patient include:

• A seat near the front of the classroom if vision problems are a concern
• Handouts of the content written on boards or overhead screens
• High-contrast printed documents, such as black type on white paper
• Large-print textbooks

What is the Life Expectancy of Someone With Albinism?

Albinism rarely affect a person's lifespan, but a person may experience some complications from this disorder. Some of the very few are; skin cancer, and decreasing vision, or blindness. However; Hermansky-Pudlak syndrome can shorten the life expectancy of person. This is due to lung disease, and bleeding problems.

How is Albinism Diagnosed?

Genetic testing offers the most accurate way to diagnosis albinism; however a complete diagnostic workup for albinism should include a physical exam, a description of changes in pigmentation, a pigment history, and a thorough exam of the eyes. An ophthalmologist should preform an electroretinogram test, which can show vision problems related to albinism.

A pigment history is a way to compare the patient's pigmentation to a family members to see if the patient's appears to be lighter. The doctor may also ask the family about any changes that haven been noticed in the patient's hair, skin, or eye color.

What are the Chances of Passing Albinism on to Offspring?

The albinism gene is recessive and hence does not cause albinism unless a person inherits two copies of the gene for albinism in other words if there is no gene that makes the normal pigment.

If a person has one gene for normal pigmentation and one gene for albinism, he or she will have enough genetic information to make normal pigment and will not suffer from the disease.

When both parents carry the gene and neither of them have albinism (carriers), then there is 25% chance that the baby will be born with albinism. This type of inheritance is called autosomal recessive inheritance. On the other hand two people with albinism will not automatically produce an albino child although the risks are several times higher. Therefore in conclusion researchers say that the disease is a mystery and more research has to be done in this area to completely understand it.

How Possible is it that a Cure Will be Found for Albinism?

Sadly, there isn't a cure for albinism. Patient's can lower the risk by staying protected against the sun as much as possible.

What are Some Organizations That can Help a Family Cope With Albinism?

I hope you have found this blog helpful in your journey to discover more about albinism. For additional information about this disorder, please visit the NOAH website. The National Organization for Albinism and Hypopigmentation (NOAH) is a volunteer organization for patient's and families that have this disorder. It proves an enormous amount of information regarding research, self-help and education. You can find more information at http://www.albinism.org

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