Countdown to International Albinism Awareness Day 

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), 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. 
On November 18, 2014 the United Nations adopted a resolution establishing June 13th as International Albinism Awareness Day. 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. 
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 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. 


Seeing the world anew

When I was young, before I went to school, I had no idea that I saw differently than others. I was well aware that the sun was not my friend. The sun could and did hurt my skin and eyes. However,, my only understanding about my vision was that I had to see the doctors at Children’s Hospital each week. During each visit my eyes were examined. This experience was extremely painful. Often when my mother and I left, I had a headache. At home though, I was just one of my parents children. i was the one who had to stay out of the sun, wear sunglasses and most often stay indoors.  It was not until I went to kindergarten that I would understand I operated at a deficit.

By the time I began school I knew I looked different than my family and than most of my community. I was the sole white skinned person within. It was with the start of school, I met caucasian children. I discovered that I was not like them either.

My eyes danced. They did their own thing. Ic ould not control them. Encouraged to see all I could, that is what I did. I navigated my world cautiously, always carefully walking down the hall at school or in the homes of relatives. I counted doors, steps, windows: just to make my way in unfamiliar environments. All the while, my eyes danced. Nystagmus. Severe nystagmus is what I learned I have. I paid attention when I saw the optometrist and the ophthalmologist.  The words they used had lots of syllables. At seven I began to ask questions. What was nystagmus? What was photophobia? What was deficit?  Perhaps because I asked, I was given answers. I don’t know that I fully understood what I was told. I did however, know what deficit meant.   And I was mad.

Being a brainy child, an exceptional child, I went to the dictionary when I heard a word I was unfamiliar with. I knew that deficit meant behind, disadvantaged. i was neither of those. Yet my eyes did not work as those of my siblings or classmates.  I had large print books that were the same size of me. I would sit alone at a large table, to accommodate the book.  Still, I would stnd over the spelling or math book, nose nearly to the page in order to read the content.

At seventeen, my life changed drastically. Low vision specialists at Kaiser Permanente introduced me to glasses with a bioptic lens. For the first time I was able to read street signs and see birds in trees. Honesty, the glasses looked horrid. The frames were black meteal, and they hurt if I wore them too long.  Yet I wear them I did. They were my ticket into the sighted world.

Throughout my adulthood I have worn reading glasses and distance glasses. I have worn contact lenses, tinted and not, to correct my vision. None of these has been particularly effective. Until now.  Now in my fifties, I have new doctors who are committed to me having the best optical experience possible. And yes, I love them. I appreciate their excitement at introducing me to new technology that will enhance my life. And so today I picked up not one but three pairs of new glasses. My life is forever changed. Images are crisper, I can read menus, and using the computer is not so difficult. It is like waking up Christmas morning discovering that Santa has brought everything I requested and more.  The world is spectacular and amazing.
I cannot wait to order prescription sunglasses. I know that nature will be astounding.