ALBINISM

Albinism is an inherited genetic condition from both parents which results in reduced or lack of colour on the skin, eyes and hair often causing sensitive skin and low vision. In most types of albinism, arising from a recessive trait, the child inherits flawed genes for making melanin from both parents. Because the task of making melanin is complex, there are many different types of albinism, involving a number of different genes. Albinism appears in different forms and may be inherited by one of several modes: autosomal recessive, autosomal dominant, or X-linked. Complete albinism involves a total absence of pigment from the hair, eyes, and skin (this is also called tyrosinase-negative oculocutaneous albinism). It is the most severe form of the condition. Affected people may appear to have hair, skin, and iris colour that are white as well as vision defects. They also have photophobia (sunlight is painful to their eyes), they sunburn easily, and do not tan. Albinism of just the eyes also occurs. This is called Ocular albinism. In this form of albinism skin colour is usually normal and eye colour may be in the normal range, however, examination of the retina will show that there is no pigment in the retina.

Needs of a Person with Albinism

The pressing needs are:

  • The need for sunscreen lotion.
  • The need for prescribed spectacles.
  • The need for regular check-ups for skin cancer symptoms and for medical treatment of skin cancer.
  • The need for sun hats and long sleeved clothes.

In Zimbabwe Albinism is seen as an unfortunate occurrence at best or as a curse from avenging ancestral spirits at worst. This general societal ignorance of the cause of albinism translates into fear, scorn, hate, or plain prejudice against persons with albinism thereby adversely affecting their day to day life. Some of ZIMAS’s members are in various stages of destitution caused by societal prejudice. Persons with albinism face physical, psychological, social and economic challenges in their day to day lives.

Physical challenges emanating from their genetic set up
  • Facial lesions
  • Sunburns
  • Cracked lips
  • Chapped skin
  • Visual problems
  • Nystagmus- rapid involuntary eye movement.
  • Strabismus- a defect of vision in which one eye cannot focus with the other because of imbalance of the eye muscles
Psychological challenges emanating from stigma and discrimination Exclusion from society
  • Withdrawal
  • Low self esteem
  • Stress
  • Paranoia
  • Depression
  • Anxiety
  •  Fear of the unknown
Social Challenges
  • Name calling
  • Myths and misconception
  • Marriage break-ups- most persons with albinism come from broken homes. In most cases, the father abandoned the family when the child with albinism was born.
  • Stigma and discrimination
  • Ostracism/exclusion
  • Marital engagement challenges- There is a large number of single parents mainly women with albinism who were dumped after they become pregnant.
  • Abuse- persons with albinism have been victims of sexual abuse because of the myth and belief that having sexual intercourse with a person with albinism cures HIV and AIDS.
Economic Challenges
  • Decreased employment opportunities due to low educational qualifications since many fail to excel academically owing to physical and psychological problems, exclusion and unwillingness of companies to employ persons with albinism.
  •  High cost of sun protection material such as sunscreen lotions, lipbulms and sunhats.

OFTEN ASKED” QUESTIONS

  • Is albinism contagious – NO
  • Is it an illness – NO
  • Is it a traditional curse – NO
  • Are people with albinism abnormal – NO
  • Is albinism only a condition – YES
  • Is it the mothers fault to give birth to an albino child – NO
  • Should society change its negative attitude towards albinism – YES