NOAH - The National Organization for Albinism and Hypopigmentation logo

Information for

Parents of Children
with Albinism

If you have just found out that your child has albinism, you undoubtedly have lots of questions and concerns. Or, perhaps you’ve known your child has albinism for some time, but only recently found NOAH. Either way, welcome to NOAH . We have created this page to answer some of the most frequently asked questions.

If you would prefer to speak to another parent of a child with albinism, please contact NOAH toll-free at 1-800-473-2310, or email NOAH. Tell us your name; your number; and a good time to reach you, and a parent of a child with albinism will contact you, In the mean time, we hope the following information is helpful.

What is albinism?
What are the effects of albinism on my child’s vision?
How can I help my child see better?
What do I need to do to protect my child’s skin?
Are there different types of albinism?
Are there other medical problems associated with albinism?
Will having albinism affect my child’s development?
How does low vision affect motor skill and coordination development?
What about school?
What is NOT true about albinism?
How can I talk with other parents of children with albinism?
How can my children talk with other kids with albinism?
What additional information and resources can NOAH provide me?
How can I become a NOAH member?


What is albinism?

Albinism is a group of genetic conditions that causes a lack of pigment. It can effect 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.

For more information on the genetics of albinism, see the NOAH Information Bulletin What is Albinism
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What are the effects of albinism on my child’s vision?

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.

For more information on how albinism affects the eyes, see the NOAH Information Bulletin What is Albinism and Low Vision Aids
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How can I help my child see better?

If your child is an infant, you should consider contacting your state agency for the Blind and your local school district to determine what early intervention services are available. Older children might benefit from the use of low vision aids. See NOAH’s Information Bulletin What is Albinism, and Low Vision Aids

Or, ask specific questions on NOAH’s Online Community.
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What do I need to do to protect my child’s skin?

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.

For more information on how albinism effects the skin and how people with albinism must protect themselves from the sun, see the NOAH Information Bulletin on Sun Protection
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Are there other medical problems associated with albinism?

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 are 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.

For more information on Hermansky Pudlak Syndrome, see the NOAH Information bulletin Hermansky Pudlak Syndrome
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Will having albinism affect my child’s development?

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).

For more information about your child’s development, please contact a teacher of visually impaired for developmental vision services. Your state agency for the blind or local children’s hospital may be able to assist you in finding such a teacher.
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How does low vision affect motor skill and coordination development?

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.

For more information about your child’s development, please contact a teacher of visually impaired for developmental vision services. Your state agency for the blind, local children’s hospital or school district may be able to assist you in finding such a teacher.
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What about school?

School can be challenge for a student with albinism but with minor modifications and minimal assistance students can be very successful. Parents should be in contact with their local school district when their child is an infant to receive assistive services that might be available.
The social side of education can potentially be the most challenging aspect. Children can often be cruel especially to those kids that are different. However with love and support, from family and others your child will find peers who accept him or her for who they are.

For more information about educational issues, see the NOAH information Bulletin Assisting the Student with Albinism in the Classroom, or the CARE Project page on NOAH's site.
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What is NOT true about albinism?

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.

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How can I talk with other parents of children with albinism?
How can my children talk with other kids with albinism?

If you’ve only recently discovered your child has albinism and you want to talk to someone who can answer your questions and understands what you’re going through, call NOAH toll-free at 1-800-473-2310, or email NOAH. Tell us your name; your number; and a good time to reach you, and NOAH will have someone contact you.

NOAH’s online albinism community gives you instant access to other parents of children with albinism with our Parents Online Community. Here, you can post a question for other parents, or simply read the concerns, solutions, and stories of other parents of children with albinism. There are also online forums for Teens with albinism, Adults with albinism, and People of Color with albinism, where you or your child can connect with people with albinism.

The best way to meet other parents of children with albinism is to come to a NOAH conference. Every two years, NOAH holds a national conference, where people with albinism, their families, and professionals come together to share information, learn from each other’s life stories, and have fun! It’s not only a great opportunity for you to meet other parents, but your kids can meet other children with albinism, an experience many people describe as life-changing! You’ll also have a chance to learn about the latest medical discoveries about albinism, learn how you can help your child see better, succeed in school, and deal with social problems.
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What additional information and resources can NOAH provide me?

NOAH publishes a variety of information bulletins about different aspects of having albinism.

Other organizations also have information about albinism.
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How can I become a NOAH member?

Learn about the advantages you’ll enjoy as a NOAH member and join!

 

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NOAH
The National Organization for Albinism and Hypopigmentation
PO Box 959, East Hampstead, NH 03826-0959
Phone: 800 473-2310 (US and Canada) Phone: 603 887-2310 Fax: 800-648-2310
http://www.albinism.org

If you have any questions or comments, please e-mail us at webmaster@albinism.org

NOAH is a volunteer organization for persons and families involved with the condition of albinism. It does not diagnose, treat, or provide genetic counseling. It is involved in self-help, while trying to promote research and education.

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