Some forms are also associated with lung and bowel disease. Do you have updated information on this disease? We want to hear from you.
Treatment Treatment. This can be done by: [2] [3] avoiding prolonged exposure to the sun, using sunscreen with a high SPF rating 20 or higher , covering up completely with clothing when exposed to the sun, and wearing sunglasses with UV protection. Individuals with vision problems may need corrective lenses. They should also have regular follow-up exams with an ophthalmologist. In rare cases, surgery may be needed.
Individuals with albinism should also have regular skin assessments to screen for skin cancer or lesions that can lead to cancer. Prognosis Prognosis. Most people with albinism live a normal life span and have the same types of medical problems as the rest of the population. Research Research. Clinical Research Resources ClinicalTrials. Click on the link to go to ClinicalTrials. Please note: Studies listed on the ClinicalTrials. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.
Organizations Organizations. Organizations Supporting this Disease. Organizations Providing General Support. Do you know of an organization? Living With Living With. Community Resources The Job Accommodation Network JAN has information on workplace accommodations and disability employment issues related to this condition. Department of Labor. Learn More Learn More. DermNet NZ provides information about this condition. MedlinePlus was designed by the National Library of Medicine to help you research your health questions, and it provides more information about this topic.
The Merck Manuals Online Medical Library provides information on this condition for patients and caregivers. A Positive Exposure program called FRAME has an educational film about albinism that was created to change how medical information is presented to healthcare professionals. Positive Exposure is an organization that uses photography, film, and narrative to transform public perceptions of people living with genetic, physical, intellectual, and behavioral differences.
In-Depth Information Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
PubMed is a searchable database of medical literature and lists journal articles that discuss Albinism. Click on the link to view a sample search on this topic. Albinism can also impair vision, resulting in nearsightedness, farsightedness, or astigmatism, which is blurry vision due to an uneven cornea. Individuals with albinism are at a higher risk of developing skin cancers and sunburns due to increased sensitivity to the sun.
The more damage caused by UV radiation, the higher the chance of getting skin cancer. UV radiation contributes to the formation of skin cancer by generating substances called free radicals, which cause DNA damage in the skin.
Pheomelanin actually causes the creation of more free radicals. Therefore, the development of skin cancer in individuals with albinism is due to both reduced protection against sun damage and the increased production of free radicals [ 4 ]. Different types of albinism come with different risks of developing skin damage and skin cancers.
For example, skin cancers are a leading cause of death in certain ethnic groups, such as African albinos. Skin cancers can be prevented by protecting the skin with sunscreen and clothing and by early skin checks [ 5 ].
Skin cancers that are detected at a later stage are more difficult to treat, which is why prevention of sun damage and skin checks are so important. One way that doctors help kids with albinism is by encouraging protection of the skin from the sun. It is crucial that doctors closely monitor children with albinism so that they can detect skin cancers early if they occur [ 1 ].
Doctors can also help kids with albinism by treating eye abnormalities. Kids with albinism should have an eye examination by the age of 4 months. Within their first 2 years, eye exams are recommended every 3—4 months, which is reduced to every 6 months between ages 2 and 4 and to once a year by the age of 5. The frequency is further reduced to 2—3 years by the age of 18—20 [ 2 ].
Eyesight problems are treated with glasses or contact lenses to improve vision [ 6 ]. Bifocals or hand-held magnifiers can also be useful. Individuals with eye misalignments may benefit from eye muscle surgery, which helps to align the eyes properly. Surgery may have to be performed multiple times to completely fix the eye alignment. There is no real cure for albinism, however one study investigated the use of a drug that helps to break down tyrosine in children with OCA type 1B.
Children treated with the drug showed an increase in pigmentation of the hair and skin; however, vision problems were not significantly improved [ 7 ] and there were a number of unpleasant side effects.
So, this drug may not work for many people, because successful treatment of vision problems is important for patients with albinism. Children with albinism may experience a great deal of bullying due to their physical appearance [ 2 ].
This bullying can easily lead to strong feelings of being unattractive or feeling left out. Light normally enters the eye only through the pupil, the dark opening in the center of the iris, but in albinism light can pass through the iris as well. For the most part, treatment consists of visual rehabilitation. Surgery to correct strabismus may improve the appearance of the eyes.
However, since surgery will not correct the misrouting of nerves from the eyes to the brain, surgery will not improve eyesight or fine binocular vision.
Surgical intervention is also available to minimize nystagmus. People with albinism are sensitive to glare, but they do not prefer to be in the dark, and they need light to see just like anyone else. Sunglasses or tinted contact lenses may help outdoors. Indoors, it is important to place lights for reading or close work over a shoulder rather than in front. Various optical aids are helpful to people with albinism, and the choice of an optical aid depends on how a person uses his or her eyes in jobs, hobbies or other usual activities.
Some people do well using bifocals which have a strong reading lens, prescription reading glasses or contact lenses. Others use handheld magnifiers or special small telescopes, and some prefer to use screen magnification products on computers.
Some people with albinism use bioptics, glasses which have small telescopes mounted on, in or behind their regular lenses so that one can look through either the regular lens or the telescope. Some states allow the use of bioptic telescopes for driving.
Optometrists or ophthalmologists who are experienced in working with low vision patients can recommend various optical aids. Clinics should provide instruction in their use. The American Foundation for the Blind maintains a directory of low vision clinics.
In the United States, most people with albinism live normal life spans and have the same types of general medical problems as the rest of the population. The lives of people with Hermansky-Pudlak Syndrome can be shortened by lung disease or other medical problems. In tropical countries, people with albinism who do not have access to adequate skin protection may develop life-threatening skin cancers.
If they use appropriate skin protection, such as sunscreens rated 20 SPF or higher and opaque clothing, people with albinism can enjoy outdoor activities even in summer.
People with albinism are at risk of isolation because the condition is often misunderstood. Social stigmatization can occur, especially within communities of color, where the race or paternity of a person with albinism may be questioned.
Families and schools must make an effort to include children with albinism in group activities. Contact with others with albinism or who have albinism in their families or communities is most helpful. NOAH can provide the names of contacts in many regions of the country. Information Bulletin — What is Albinism?
Albinism occurs in all racial and ethnic groups throughout the world.
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