International Albinism Awareness Day?

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by Natalie Devora

Albinism: A rare non-contagious genetically inherited condition which occurs worldwide regardless of ethnicity or gender. It most commonly results in the lack of melanin pigment in the hair, skin and eyes (Oculocutaneous albinism (OCA)), causing vulnerability to sun exposure. This can lead to skin cancer and severe visual impairment. Both parents must carry the gene for it to be passed on to their children, even if they do not themselves have manifestations of the condition. OHCHR

On November 18, 2014 the United Nations adopted a resolution establishing June 13th as International Albinism Awareness Day (IAAD). This historic resolution firmly fixes albinism advocacy at a global level. Adoption of the resolution was the latest result of the vigorous efforts of the organization, Under the Same Sun (UTSS). UTSS founder and president, Peter Ash, spearheaded political efforts in the U.N. to address discrimination against people with albinism, particularly in Africa. NOAH

I am so excited that as a person with albinism (PWA) along with others, I have an opportunity to celebrate albinism, while also bringing attention and awareness about how others throughout the world experience life as PWA.

I would like to share a bit about myself. I am a daughter, a mother, and a woman who is passionate about life. I am the only white skinned black person in my family. No one else looks quite like me. My skin is alabaster, my hair white and my eyes are translucent. Like a chameleon, they take on different colors according to what I wear. I was born with albinism. And yet, while my skin is the first thing people notice when they meet me, I know that I am so much more.

I love my work with families. I love traveling, literature and writing. I love that I was taught to believe I could do anything I wanted to as long as I

was willing to do the work. And, so now as we are two weeks away from a global celebration for the safety, rights and well being of children and adults living with albinism, I will be posting here each day. I will relate my experiences in navigating life with albinism. There will be information about the humanitarian work many organizations are doing in various albinism communities. Most of all, I will share my excitement about this momentous recognition on the part of the United Nations and what this can mean for so many individuals.

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