Albinism involves a group of inherited conditions. People affected by albinism have little to no pigmentation in their hair, eyes, or skin and have inherited genes that have been altered and do not produce the average amounts of a pigment known as, 'melanin.' Approximately one in every seventeen-thousand persons in America has a form of albinism, which affects people of all racial backgrounds.
The majority of children with albinism are born to parents who have average eye and hair color for their ethnicity. At times, people are not aware they do have a form of albinism. One of the myths about albinism is that people with it have red eyes; the fact is there are different forms of albinism and the amount of pigmentation in the person's eyes varies. While some people with albinism do have violet or reddish eyes, the majority of people with it have blue ones. Some people with albinism even have brown or hazel eyes. Unfortunately; every form of albinism is associated with vision issues.
Forms of Albinism
Not everyone with albinism has light hair and skin; although most do. 'Oculocutaneous,' albinism or, 'OCA,' involves the person's hair, eyes, and skin. 'Ocular albinism,' or, 'OA,' is far less common and mostly involves the person's eyes; their hair and skin might appear either similar or somewhat lighter than that of their family members. Researchers have used different systems to classify albinism through the years.
Overall, the systems used to classify contrasted forms of albinism range from those who have a near lack of pigmentation to those who have slight pigmentation. People with less pigmentation have skin and hair that are cream-colored and their vision is many times in the range of 20/200. People with albinism who have slight pigmentation have hair that appears red-tinged or yellow; they may have better vision as well. Recent research uses DNA analysis to reach a more precise classification system for albinism. There are now four recognized forms of albinism: OCA1, OCA2, OCA3, and OCA4 - as well as division into further subtypes.
Albinism and Vision Issues
People who have albinism always experience vision issues; a number of them have low vision. The degree to which a person with albinism experiences a vision impairment varies with the form of albinism they have. A portion of the population with albinism are legally blind, although they still have the ability to read and do not use Braille. Some people with albinism see well enough to drive. Vision issues related to the disability are the result of exceptional development of the person's retina, as well as exceptional patterns of nerve connections between their eye and their brain. Due to this fact, the primary test for albinism is a simple eye examination.
Albinism and Vision Rehabilitation
Eye problems people with albinism experience are the result of exceptional development of their eye due to lack of pigmentation and many times include the following:
Treatment of eye conditions related to albinism is comprised of visual rehabilitation. Surgical intervention to correct strabismus might improve the appearance of the person's eyes, but it will not correct the mis-routing of the nerves from the person's eyes to their brain. Surgery also will not improve the person's eyesight, or their fine binocular vision. When a person with albinism has estropia, or crossed-eyes, surgery might improve their vision through expansion of the area the person's eyes can see as they look at one point.
Glare is an issue for people with albinism; they are sensitive to it and while they do not prefer to be in the dark - they need light to see. Use of tinted contact lenses or sunglasses can help while they are outdoors. While inside, placement of reading lights is important to avoid glare. Putting light sources so they shine light over the person's shoulder; for example, instead of in front of them can help.
There are a number of different optical aids a person with albinism can use depending upon how they use their eyes at work or during other activities. Bifocals with strong reading lenses or prescription glasses, as well as contact lenses can help. There are also hand-held magnifying devices, or even small specially-constructed telescopes some people with albinism prefer to use. Screen magnification software or hardware can help while using a computer.
Bi-optics are glasses with small telescopes mounted on, in, or behind a person's regular lenses so they may look through either their glasses, or the telescope. Newer bi-optic designs use lenses that are both smaller and lighter-weight. In some states, the use of bi-optic telescopes for driving is allowed.
Ophthalmologists and optometrists who have experience in working with people who have low-vision might recommend different optical aids. Vision clinics should provide a person with albinism any vision aids on a trial loan basis, as well as any instructions for using them. The American Foundation for the Blind has a directory of low-vision clinics. Canada provides support for people with low-vision through the Canadian National Institute for the Blind.
Albinism and Health Issues
People with albinism in America live average life spans and experience the same range of health issues as the rest of the population at large. People with Hermansky-Pudlak Syndrome might experience shortened live due to lung disease, or other problems. Additional conditions include Griscelli Syndrome and Chediak-Higashi.
The majority of people who have albinism have fair complexions; yet a person's hair or skin color is not sufficient to diagnose a person with albinism. People who do have albinism need to be careful to avoid sun damage to their skin. Wearing hats, sun-protective clothing, and sunscreen lotions is important. People with albinism who do not use appropriate skin protection have the potential to develop life-threatening forms of skin cancers. Use of sunscreen lotions with a rating of twenty SPF or great and protective clothing though, can find people with albinism enjoying outdoor activities in the summer.
Albinism and those who experience the disability are many times misunderstood. There is potential for social stigmatization to happen, particularly when the race or paternity of a person with albinism might be questioned. A result of this can be isolation. Both families and schools need to make efforts to ensure that children with albinism are not excluded from group activities. Having contact with others who experience albinism can help and NOAH can provide the names of contacts in a number of areas of the nation.
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