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Albinism is a genetic conditions that causes a lack of pigment. It can affect only the eyes (ocular albinism) or both the eyes and skin (oculocutaneous albinism).

Most types of albinism are inherited when an individual receives the albinism gene from both parents. The exception is one type of ocular albinism, which is passed on from mothers to their sons.

The lack of pigment during the development of the eye causes an abnormal development of the retina and affects the formation of the nerve pathways from the eyes to the brain, which causes decreased visual acuity or low vision that cannot be corrected to 20/20.

Adults with albinism often describe their vision as lacking fine detail. Corrective lenses (i.e. glasses or contact lenses) and low vision aids (i.e. magnifiers or telescopes) can provide some clarification. Most people with albinism use their vision for reading, and do not use Braille. Some have vision good enough to drive a car

The degree of visual impairment of children with albinism varies widely. People with albinism do not have perfect vision, however albinism also does not cause blindness.

individual child’s vision can also vary somewhat based on the sunlight and artificial light in the classroom, fatigue, and other factors that vary from hour to hour and day to day. Since what children with albinism see varies widely, as does the efficiency with which each child uses its vision, it is important to consider each child with albinism individually.

Yes, most students with albinism can participate in general education programs with proper intervention.

The Student, his or her parents, your school’s vision resource teacher, the child’s eye doctor, and you should work as a team to determine what modifications best suit the individual child. Some potential modifications include: Moving the child’s seat to the front row so the student can see the chalkboard, marker board projector Changing where the child sits so they can avoid glare from overhead lights or windows.

Allow the child to copy your overhead projector acetates if the child can’t see the projected overhead. Allow the student to copy another student’s notes if they can’t see the board. Enlarge tests and handouts.

Students with albinism may or may not need large print. The student’s judgment as to which books need to be enlarged is important. Keep in mind that some students, especially middle school / junior high school aged students, might prefer not to use large print books in school because it makes them feel different from their peers.

One possible solution is for the student to use regular text in class use and a set of large print text at home.

The close vision required for reading varies widely among people with albinism. Some students with albinism have sufficient vision to read standard text, some use large print text, some use low vision aides to read standard text, some use electronic devices such as computers with software that can enlarge text or read aloud, some use audio books, and some use Braille.

Students with albinism may use more than one of the methods listed above depending upon age and grade level. And, the manner in which students with albinism read may change as they progress from elementary school to middle school, high school and college. A learning media assessment from your child's teacher of the visually impaired (TVI) can be conducted to help determine what your child currently needs or may need in the future as type size and spacing changes. The Individuals with Disabilities Education Act (IDEA) includes specific provisions requiring the IEP team (parents, older students, TVI, teachers and other representatives and invited guests) to consider whether Braille is needed or will be needed in the future. IDEA Regulation

Many students with albinism use hand held magnifiers, stand magnifiers, or special reading glasses to read up close. Contact lenses, monoculars (hand held telescopes used with only one eye.), or bioptics (glasses with small telescopic lenses mounted in the standard lenses.)

could help your student’s distance vision. In consultation with your school’s vision teacher, an optometrist or ophthalmologist experienced in low vision can prescribe specific aids for the individual student

Computers can be of great use for students with low vision. Students with albinism should begin learning how to use a computer keyboard with typing-readiness computer games as early as Kindergarten and formal typing as early as third grade.

Older students can use a laptop to take notes in class and read them from the screen or print them out at home. Some students with albinism benefit from Closed Circuit Television (CCTV), a device which enlarges text. Books on tape are also helpful for some students who have difficulty reading text or who get eyestrain from reading a lot.

There are several ways you can make taking a standardized test easier and more accurate for your student with low vision: Enlarge the test book text Read the test to the student

Allow the student to use a magnifier Allow the student extra time or no time limit to complete the test.\ Allow the student to circle answers in the test booklet, as opposed to bubbling in a Scan-Tron form, which can be difficult to see for some low vision students.

The social side of education can be the most challenging aspect for a child with albinism. It is a common fact that children can be cruel especially to those kids that are different.

Students with ocolocutaneous albinism (albinism affecting the skin and eyes) inherently stand out because of their physical appearance. Furthermore, modifications the child may need to make to compensate for low vision sometimes makes the child’s feeling of isolation even worse. Therefore, it’s important that you avoid drawing attention to your student with albinism.

The school staff needs to find ways to include students with low vision in all activities and to avoid leaving them sitting on the sidelines

As the teacher of a student with albinism, you might be the first person to intervene in the child’s life, especially if the child comes from a disadvantaged home.

If a child’s family has limited financial resources, many states will pay for services, such as eye exams, low vision evaluation, and independence training that can help a child with albinism..

People with oculocutaneous albinism have a skin color that is lighter than others in their ethnic group. They sunburn easily (even on cloudy days). Sunscreen with an SPF rating of at least a 30 is a must for children. Consult your pediatrician regarding the use of sunscreen on an infant.

A good pair of sunglasses and different types of hats will also come in handy. When spending time outside, wearing long sleeve shirts and pants, and spending time in the shade are other options. It is important to let children play and be as “normal” as other kids.

Hermansky-Pudlak Syndrome (HPS) is a rare type of albinism which includes a bleeding tendency and lung disease .HPS may also include inflammatory bowel disease or kidney disease. The severity of these problems varies much from person to person. It should be suspected in any child with albinism who shows easy bruising or unusual bleeding, such as repeated nosebleeds or bloody diarrhea.

The diagnosis of HPS is made by a test not done in usual clinic, hospital, or reference labs. In this test, platelet from a blood sample is examined with an electron microscope. In HPS the platelet contain few or no dense bodies.

It should be noted that few children with albinism have Hermansky Pudlak Syndrome, but parents should keep a watchful eye.

Children with albinism develop (walk, talk, crawl etc.) at a pace that is in the range of normal to slightly delayed (2-3 months behind their “normally sighted” peers).

In the early months, children with albinism may not be able to fixate on objects or make eye contact with caregivers. They may not reach out toward a rattle or toy and may "lose" an object if moved too quickly in field of vision.

The depth perception is impaired which may cause a child's reach to be "off the mark" a bit. They may also have a head tilt or turn their head slightly to one side when studying an object. This is probably their best line of vision and the child should be allowed to turn their head in a way that makes their vision the clearest to themselves.

Even today, there are tons of myths out there about albinism. albinism is rare enough that accurate information is hard to come by even in medical texts. Some common myths include:

Your child will be blind: There is a big difference between being totally blind and having low vision. Albinism causes “low vision”, or reduced visual acuity, but it does NOT cause total blindness! Some people with albinism have vision that is best corrected to 20/200, People in this situation are called legally blind. Legally blind is an official term used to qualify people for assistive services. It does NOT mean the person is totally blind.

Your child will never dribble a basketball, never drive, never read, never…: The degree of visual impairment varies from person to person, as does the effects of each person’s low vision on what they personally find easy and difficult to do. It’s hard to predict the degree of visual impairment in infants since they can’t communicate what they see. The fact is, people with albinism participate in all kinds of sports, some are able to drive, and many can read normal print. Letting your child discover their own abilities and limits is the best way to discover how a child with albinism’s vision will affect what they can do.

Your child can’t have albinism: They don’t have pink eyes: Generally, people with albinism have blue or slate gray eyes. Some people with greater amounts of pigment have green or hazel eyes. Those with lessor amounts of pigment will have an eye color that has a reddish tint to it. Because the eye of the person with albinism has an iris which does not block out light, a flash photo of someone with albinism may show the light of the flash reflected off of the back of the eye, giving the appearance in a photograph that they have red eyes.

Your child is mentally impaired: Albinism has no effect on mental development. Your child is deaf: While hearing problems may result from albinism, such problems are rare.