ABC’s program 20/20 is one of my favorites. Last Friday’s episode documented miserable life of people with albino around the world, especially in Africa.
Albino is a recessive genetic disease resulted from complete or partial absence of pigment. There are two kinds of albino. One is oculocutaneous albino. Patients with this type of albino are lack of pigment in skin and eyes. As a result, they are vulnerable to sunshine and have high risk of developing skin cancer and visual abnormality. The inheritance pattern is autosomal recessive. The other is ocular albino, which mainly leads to visual problems. It is an X-link recessive disease, affecting more males than females. Compared to many other genetic disorders, albino patients have normal intelligence.
Despite the fact that albino patients usually have neither movement impairment nor mental retardation, they are not able to avoid being teased or alienated by their peers. For example, an albino girl documented in the episode had to switch to a special school when suffering from post traumatic stress disorder in regular school caused by being teased and bullied. Another teenage albino girl spent about 20 hours at home, reading and playing with her puppy. She had no friends and social life until she colored her hair and darkened her skin in a beauty salon. Apparently, people judge and discriminate them based on their pale look. It happens even among people of the same ethnicity and cultural background. Albinos have not been treated equally.
Far from being treated fairly, what happened to albinos in Tanzania was unimaginable and horrible, a nightmare to almost every albinos. Perhaps because of inbreeding, there was a big population of albino in Tanzania. Lack of basic knowledge and prevalent superstition unfortunately lead to the tragedy of albinos. They were hunted as animals for their body parts such as hair, legs and arms. Witch doctors believed that albino’s body parts could be used as ingredients in medicine, or could bless people to be rich. As a consequence, many albinos were mercilessly killed or disabled. The barbarian hunting does happen in the 21st century, believe it or not.
I feel sorry for those innocent sufferers of genetic disorders. Being a patient is not their fault and I don’t believe they would choose to be victims of rare diseases if they had other options. Their life is preprogrammed even before birth. Instead of enjoying the journey of life, they are constantly and irreversibly deteriorating, and eventually dead. While other people envision of finishing college and raising families, they have to fight with the discrimination and prejudice from the society. Science and technology have revealed the pathogenic mechanisms of many genetic disorders at molecular level and made it possible to detect those disorders in fetus, which provides great opportunities for couples to choose the quality of life as they planned. But gaining social acceptance and support is more stressful for people with rare genetic disorders than the physical pain they suffer.
