WHAT IS ALBINISM?

MY VIDEO: (Click link below)
 http://www.youtube.com/watch?v=_Ey-hNH4zEg&list=LL0F8Fq8lkeVGk_FgA-2Q7BA&feature=mh_lolz


Albinism is genetic condition most often characterized by a lack of pigment in a person’s eyes, hair, and skin. It is caused by inheriting a recessive gene from each parents, and occurs in approximately one in every 17,000 persons in the United States. While the condition is quite rare, one in seventy persons actually carries a recessive gene for a type of albinism. Two people who both have the recessive gene have a one in four chance that their child will have albinism. There are several different types of albinism, each with different characteristics. 

Oculocutaneous Albinism (OCA) 

Oculocutaneous albinism is the most common form of albinism and exists in many different forms OCA’s caused by a genetic mutation involving the enzyme tyrosinase which converts tyrosine into melanin. The first is referred to as OCA1a, and is sometimes called “complete albinism.” It is characterized by the body’s inability to change the amino acid tyrosine into melanin. People with OCA1a have no pigment, and have white hair, white skin and light blue, gray or violet eyes.

Oculocutaneous Albinism (OCA1b) 

The second variation of OCA1b, in which people develop some level of tyrosinase activity and detectable amounts of pigment, and can even tan slightly. The amount of pigment varies in different people, but most doctors agree that people with OCA1b have some observable pigment by the age of 2. If your child shows no signs of any freckling or darkening of his hair or eyelashes by the age of 2, he most likely has OCA1a.

Oculocutaneous Albinism (OCA2)

This is the most common form of albinism, and results from a mutation of a completely different gene that governs another enzyme for melanin production. People with OCA2 generally have slightly more pigment, and may have better vision than people with OCA1. There is no definitive way to tell whether your child has OCA1b or OCA2 without a genetic test, but the more pigment your child has the better her vision, the more likely it is she has OCA2.

Ocular Albinism (OA)

The term “ocular albinism” describes an inherited condition that differs from OCA in that the eyes lack melanin pigment, but the skin and hair show normal or near-normal coloration. With ocular albinism, the color of the iris of the eye may vary from blue to green or even to brown, and sometimes darkens with age. However, the light shines back through the eye upon examination, since very little pigment is present in the retina. The lack of pigment in the eye causes the same kinds of vision problems associated with other forms of albinism. In most cases, ocular albinism is X-linked, meaning that the gene that causes it lies on the X chromosome. X-linked ocular albinism occurs almost exclusively in makes. It is passed from mothers who carry the gene to their sons.

GENETICS

A good way to learn about the genetics of albinism is to consult with a genetics counselor. Short of that, you need to think back to high school genetics to understand what happened to cause a child to be born with albinism. Keep in mind that, with the exception of ocular albinism, albinism occurs only when both parents carry an albinism gene and both parents pass it to their child.

This helps us understand that when two parents carry the same albinism gene and they have a baby, there is a 1/4 chance that the child will have albinism. They will have a 1/2 chance that the child will not have albinism but be a carrier and a 1/4 chance that the child will not have albinism and not be a carrier.

MYTHS AND STEREOTYPES

Now that you have a better understanding of what albinism is, we can dispel some of the myths associated with the condition. The most common one is that people with albinism have red eyes. They DO NOT! At times, their eyes will have a reddish tint to them if the light hits them in a certain way, but most people with albinism have light blue or gray eyes. Some have hazel or brown eyes, and a few have violet eyes. “Red eyes” myth is particularly disturbing because it is so pervasive. People have been known to say, “She can't have albinism because she doesn’t have red eyes.”

Another common misperception about albinism is that it always results in complete lack of pigment. There are many different types of albinism. Many people with albinism have some form of melanin and may tan slightly. People with albinism can have blonde hair, red hair or even light brown hair. 

Other myths include that the belief that a child with albinism will be blind. Albinism causes “low vision”, or reduced vision acuity, but not blindness. Some people with albinism have vision that can be corrected to 20/200. People in this situation are called “legally blind” – an official designation that qualifies them for a variety of assistive services, but does not mean that are totally blind.

Less common, but equally untrue, are the myths that people with albinism are mentally impaired or have “special powers.” Some people with albinism have been asked if they glow in the dark, or can see in the dark. They entertainment industry have perpetuated these myths by portraying people with albinism in stereotypical roles. We hope that time and increased advocacy will courter this negative portrayal.


Personal experience:
I can not count how many times I have been told, "its impossible you can't have albinism because you do not have red eyes." Over the years I have had many people tell me some interesting things and I'm sure that they don't even know what they are even talking about. 

IMPACT ON VISION

There is a wide range of visual acuity in people with albinism, and new parents often wonder where their child will end up on the vision spectrum. It is not possible to accurately predict during infancy what your child's vision will eventually be because vision development depends on many factors. In addition, there are a verity of adaptive devices that can help improve vision- and more are being developed all the time. The most important question will not be how much vision your child has, but how he uses the vision he does have.

People with albinism generally have what is called “low vision” which bilateral vision impairment that cannot be corrected by medical or therapeutic intervention, or by the use of specialized eye wear. Nonetheless, low vision can certainly be treated. 

The most common problems associated with albinism are:

-Reduced Visual Acuity

-Light Sensitivity 

-Nystagmus

Close Look at involuntary eye movement:
http://www.youtube.com/watch?v=oWTgu1paGDs

ALBINISM ACROSS THE GLOBE

UNDER THE SAME SUN:

People with albinism in Africa killed for body parts.. 

WARNING some graphic material

http://www.youtube.com/watch?v=9F6UpuJIFaY

Under the Same Sun (UTSS) Fund is a Canadian, Christian charity founded in 2008 by the current CEO, Peter Ash. UTSS is investing significantly within Tanzania to improve the lives of persons with albinism (PWA) by establishing a well staffed office and resource center there. "Our primary focus is on advocacy and education as well as assisting PWA to access external information, education bursaries, health care and other community supports available to assist with their genetic condition."

EDUCATION AND TESTING

Certain factors must be considered when testing a child with a visual impairment. Professionals who examine your child may not have experience with visual impairment and may not be familiar with low vision accommodations. It is important to provide the specialist with background information on albinism, and for you to advocate for appropriate accommodations for your child so the evaluation can be as valid as possible. Remember to consider the following environmental factors: 

• Is the material presented in a way that your child can access it? Can she get close enough to the image to see it?
• Is the test room “albinism-friendly”? Is there glare coming in from outside windows? Are there harsh fluorescent lights and blinding white walls?
• Does the testing surface promote good contrast? IF your baby will be tested on the floor, can a dark, solid color blanket be used to eliminate glare and help with contrast?  

ADAPTIVE TECHNOLOGY

New technology has changed the way that people who are visually impaired access information and use their vision. Children with albinism now have access to a variety of adaptive devices and technologies that can enhance their vision and help them accomplish everyday tasks. Many low tech adaptations also offer inexpensive solutions that can make a major difference in your child’s life. 

Your state office for the visually impaired may have a lending library where you can borrow different equipment to try out. If your state does not provide the technology you believe your child needs, contact NOAH or your local Lion’s Club for more information and assistance.


CLOSED CIRCUIT TELEVISION:

What is adaptive technology? It is any kind of device or aid that can accommodate, enhance or improve your child’s vision. Teaching your child to use adaptive technology can increase his independence and self-esteem by improving his access to information. Simply put, adaptive technology helps to level the playing field for your child. Examples include hand-held magnifiers, glare screens for computer monitors, closed-circuit television, and computer software that enlarges images on the screen or converts text into an audio format. Technology improves on a daily basis, so you and your child should be prepared to do further research on the latest innovations. A simple internet search of the term low vision assistive devices should provide you with the latest technological advances. Your vision teacher will also be able to help you learn more about what is available when your child is ready.


Personal experience: When I was in kindergarten I had a wonderful teacher who incorporated my adaptive technology with the whole class. EVERYONE used the C.C.-T.V. that was designated for my use. She made this piece of equipment part of the everyday classroom and helped me to not to be ashamed to use it.