Understanding ALBINISM

Albinism is refered to as an autosomal recessive condition. It is not a disease, but strictly hereditary; meaning that it cannot be transferred by blood transfusions or contact with another person. It is characterised by the complete or partial absence of pigment in the skin, eyes or hair because of abnormal genes inherited from parents that do not produce the needed amounts of melanin. Both parents must carry an Albinism gene for the child to inherit it.

Albinism is often a taboo subject people frown upon. It is a medical condition which comes with various disabilities and social problems.

  1. Vision Problems such as nystagmus ( regular horizontal back and forth movement of the eyes), photophobia (sensitivity to bright light and glare) and optic nerve misrouting  (the nerve signals from the retina to the brain do not follow the usual nerve routes)
  2. Skin Problems – Albinism sufferers are more prone to skin cancer than non-sufferers as their skin lacks the dark pigment melanin, which helps protect the skin from the sun’s ultraviolet radiation. Their skin also burns more easily from overexposure.
  3. Social exclusion – An albinism sufferer is often ostracised due to their physical appearance. From childhood to adulthood, a sufferer faces many challenges and discrimination from peers, as well as in the workplace.
  4. 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.

Albinism affects mammals, such as humans, amphibians, reptiles, birds and fish. In fact, it is more common in animals than in humans (think white mice and white kangooroos for instance).

According to the Albinism Fellowship, one in 17 000 people in United Kingdom are born with some type of Albinism. Most people with albinism are born to parents who have the right skin and hair tones for their ethnic background.

The Parvez family from Conventy, UK; are thought to be the world’s largest asian albino family – 16 of them suffer from Albinism

There are several types of Albinism but the two main ones are:

1. Oculocutaneous Albinism (OCA) – Researchers have identified ten types of variations within this type of Albinism, however the most common ones are:

Type 1 Oculocutaneous Albinism (Tyrosinase Negative Albinism): The enzyme tyrosinase is present, but the pigment cells are unable to produce the melanin. Therefore sufferers have NO pigmentation to their skin and hair. Hair is generally platinum and skin is very pale. Eyes will appear blue or blue/grey. Their vision will be impaired significantly.

 Type 2 Oculocutaneous Albinism (Tyrosinase Positive Albinism):  The enzyme is either not there or a non functional one is produced. Sufferers have a some pigmentation to their skin, hair is usually blond and their eyes are blue or light brown. Their vision will be less impaired due to increased pigmentation.

2. Ocular Albinism (OA) – affects the eyes only, although some people may have slightly lighter skin and hair in comparison to their family members.

A common myth is that by definition people with albinism have red eyes. The eyes may appear red or pink in some individuals due to a reflection of blood vessels within the iris (because of the lack of colour).

The amount of pigment in the eyes will vary depending on the type of albinism an individual suffers. Most have blue and hazel eyes, and others have brownish eyes.

Albino model Stephen Thompson appears with Daphne Groeneveld  Read more: http://www.dailymail.co.uk/femail/article-1338506/Givenchy-casts-albino-model-Stephen-Thompson-latest-advertising-campaign.html#ixzz1uFlN1xgn
 

I would definitely recommend:

The recent video interview of the World’s biggest albino family:

http://www.itv.com/thismorning/life/life-as-an-albino-family/

– Bianca’s website to anyone wanting to know a bit more about living with Albinism.

http://www.knowlton-family.co.uk/Albinism/bianca.htm

Positive Exposure: A ‘a highly innovative arts organization working with individuals living with genetic difference.’

http://www.positiveexposure.org/home.html

– The Albinism Fellowship: A ‘positive and socialble volunteer-run organisation that aims to provide information, advice and support for people with Albinism and their families.’  They are based in the UK and are currently recruiting volunterrs to join their contact person network

http://www.albinism.org.uk/index.php

– This Link: Nineteenth Century images of  Albinism. Some photographs I found scary since all are deceased. I hate horror movies, I do not know why I’m saying this, but it is worth mentioning 🙂

http://members.optusnet.com.au/~msafier/albinism/c19albinos.html

– Brazilian photographer Gustavo Lacerda’s Albinos photography series

http://www.gustavolacerda.com.br/

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2 comments

  1. monicaali · · Reply

    Beautiful pictures of beautiful people. So sad that they have to deal with social problems when they already have so many medical problems. I wish human´s didn´t have the urge to put people in boxes & be afraid of minorities.

    1. Honestly speaking, I too had my reserves due to influences and perceptions accumulated over the years. But nothing beats a little research into the things we do not necessarily understand or consider to be ‘normal’. I feel enlightened after this post. Hope it helps someone. Ignorance isn’t always bliss 🙂

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