June 13th marks International Albinism Awareness Day. Albinism is a rare, non-contagious, genetically inherited difference that affects the amount of melanin (pigmentation)Â produced by an individual. This lack of pigmentation in the hair, skin, and eyes causes vulnerability to bright light and sunlight. Due to a lack of melanin, persons with albinism often have a permanent visual impairment.
This year’s theme is “Made to Shine” and Berkshire Vision had a chance to talk to one of our Volunteers about Albinism.
How does Albinism affect eyesight?
Albinism is an inherited genetic condition that causes a lack of pigment in the hair and skin but also in the retina of the eye so people who have albinism have varying levels of vision impairment. Albinism affects all cultures and about 1 in 17,000 people in the UK.
What is something someone may not know about Albinism?
People with albinism do not have red or pink eyes. They usually have grey or blue eyes.
What is the biggest challenge for someone with Albinism?
The biggest challenge is often people misunderstanding your level of vision or how it can be affected by sunlight as people with albinism tend to be very light sensitive, (photosensitive). The misrepresentation of albinism in media and film is still a challenge. As a parent of a child with albinism, I think the biggest challenge is inclusion and constantly campaigning for your child to have opportunities that other people take for granted and for other people to fully understand the impact of vision loss on all aspects of life.
What’s the best way people can help?
The best way to help someone with albinism is to not make assumptions about what someone can or can not see.
What do you wish more people understood about Albinism?
That Albinism is not only about looking different but about vision impairment too.
Â
