Pakistan Albinism Support Group - PASG

Did you know that a person with albinism can develop sores on skin due to long exposure to sun rays and these sores could develop into skin cancer because of the sensitivity of the skin? For individuals with albinism, it is necessary to try to stay out of the sun from 11:00 to 15:00 and apply sunscreen. Moreover, proper clothing like full-sleeved shirts and wide-brim hats could also be used to limit UV rays from reaching the skin.

Sources: albinism.org

An important part of awareness about albinism itself involves understanding the disease. A better understanding of the condition can help tackle myths and overall improve the quality of life.
So to begin with what is albinism?
It is a genetic disease where people are born without the pigment (color) in their bodies. The pigment is called melanin and is responsible for the color of eyes, skin and hair. Most people with albinism have very pale skin, hair and eyes.
There are different kinds of albinism and they are divided on the basis of their presentation. For instance, “oculocutaneous albinism” where people have extremely pale skin and eyes and white hair. And then there is “ocular albinism”. People with this condition have only eyes affected. They usually have blue eyes. In some forms of ocular albinism, people have might develop problems in hearing leading to deafness because of the damage to hearing nerve.

People with albinism with eyesight problems wear glasses or contact lenses to correct near-sightedness, far sightedness or astigmatism. Others might need eye surgery. Albinism does not make a person completely blind. Some of them may develop what is called as legal blind but it does not mean they have lost their vision completely it just means that they need larger prints or magnifiers to help them. Lack of color in iris makes them very sensitive to light, wearing sunglasses or tinted contact lenses can help make them comfortable.

Melanin helps our skin from sun, lack of it in albinism makes them highly susceptible to skin cancers. Sunscreens, avoiding sun exposure, wearing fully sleeved clothes can significantly reduce the risk.

Albinism can’t be cured but do not need special treatments other than precautions such as vision care and sunscreens.

sources: kidshealth.org
healthline.com
mayoclinic.org

Living with albinism can be challenging especially in a society that knows little or nothing about the disorder.
The social aspects of albinism are influenced by multiple factors, such as:
1. Lack of knowledge:
Social attitudes toward albinism are often similar to those experienced by other disability and minority groups. A person with albinism can feel a lot of pressure, both from themselves and from other people, to minimize the differences albinism causes. The pressure can even lead a person with albinism to deny entirely that he or she has albinism, thereby losing touch with a very important aspect of one’s identity.
2. Physical Appearance:
The white hair and skin of oculocutaneous albinism is a powerful factor from the moment of birth. Color is a highly charged characteristic in our culture now and historically. Strangers will often make unwanted and unkind comments about the appearance of a child. The use of derogatory names for persons with albinism has led to prejudice and stereotypes which lead communities to condemn them based on the condition rather than appreciate their humanity first.
3. Language, Myths and stereotypes:
Teasing and name-calling are other ways in which language can be very dehumanizing. Almost all children face teasing during their school years and they need to develop positive coping strategies. All the myths and misconceptions associated with albinism makes the life of people with albinism even more daunting.
4. The family
It is vital that the family have accurate information about albinism to support their children and protect them from emotional trauma they might face due to the society. Family need support and time to understand the condition of their loved one. Voicing any frustration or sadness to a family member or friend who understands can help the child with albinism come out of stress.
By educating ourselves, we can help overcome this discrimination and play our part in making this world a better place.

Sources:http://www.salifkeita.us/careofalbinochildren/
https://kidshealth.org/en/teens/albinism.html
https://www.albinism.org/

Albinism is a genetic disorder of abnormal melanin (pigment that gives skin it’s colour) formation, which results into the hypopigmentation of skin, hair and eyes. These individuals have a high possibility of skin cancer. Albinism is an inherited condition and family history is the only known risk factor of the disorder. Owing to the rise in family marriages, The incidence of albinism, long considered a rare genetic disease, has now increased. However, people are still unaware of it leading towards the ignorance of necessary medical and counselling needs for such individuals. Around the world, different societies working to improve the lives of people with albinism are coming together to form an alliance. Pakistan, however, has still somehow managed to overlook the importance of increasing awareness regarding this condition. Through this society “Pakistan albinism support group” we aim to provide accurate and authentic information regarding all aspects of albinism and to provide a safe space to people with albinism and their families to voice their concerns and find acceptance, support and help if needed.