International Albinism Awareness day

Today is International Albinism Awareness Day. In 2014 the General Assembly adopted a resolution proclaiming, with effect from 2015 that June 13th be known as International Albinism Awareness Day. People with albinism all over the world face discrimination particularly those living in Africa. Albinism also continues to be misunderstood socially and medically even here in America. I am still blown away by the lack of knowledge many doctors have about this. I read stories of people in the UK and the USA whose children were not diagnosed for years even after seeing various doctors or they have a limited knowledge of the medical needs of a person with albinism.

Albinofoundation.org states “The overall aim of the celebration is to create the much needed awareness that members of the public and governments at all levels need, on the challenges faced by persons with albinism and ensure the total eradication of all forms of discrimination, dehumanization, and stigmatization associated with the condition, as well as provide the necessary tools that will improve their wellbeing”.

One of the ways I like to spread awareness is through this blog, others hold events with families and friends, perhaps one day my sons will be able to help spread awareness through their schools. I count myself lucky every day to live in a city with some of the best doctors and with some wonderful organisations that have been instrumental in assisting me in getting Nash the best support, others are not so lucky.

 

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