I have albinism. Most people are more familiar with the word albino. Albinism is a genetic condition that causes a lack of pigment in the skin, hair and eyes. I can legitimately say I am not wired according to diagram. The nerve pathways from my eyes to my brain are not the normal 50/50 split like most people, they are more like 80/20 favoring my left eye. This means I only see out of one eye at a time. Due to my lack of pigment, parts of my inner eye didn’t develop correctly, add that to my astigmatism, and photophobia (sensitivity to light) and my vision just isn’t all that great.
My response to all this is yeah, so what? Big deal. Remember, this is my normal. I have always seen this way. I know nothing else. This is also a response developed over many years and after conquering many barriers.
I was raised in a loving supportive home. When the doctor gave my mother the diagnosis, he said I’d be blind and not to expect a lot from me. Fortunately, she ignored him. She encouraged me find my own limits and disregard the limits others placed on me.
It wasn’t always easy. Kids can be so cruel. I looked different and I acted differently. I was teased mercilessly. They called me Snow White, Casper and The Pop ‘N Fresh Doughboy. On the bus in middle school, they would steal my hat and play keep away. When you combine bright sun light streaming in the windows and a small item changing locations quickly, I lost a lot of hats.
In eighth grade, I finally had the opportunity to meet someone else who looked like me. I met Jan, an adult woman with albinism. It was a life changing experience. I realized it wasn’t just me; I was not alone and it was going to get better.
Jan, my mom, myself and four others founded NOAH, the National Organization for Albinism and Hypopigmentation. I’m passionate about educating people about albinism. Children continue to be diagnosed and parents don’t always get accurate information they need. In developing countries, albinism is akin to a death sentence. For example people with albinism in Tanzania are slaughtered because in that culture, it is believed an albino’s blood, hair and bones can be used in potions that will make people wealthy.
For me, having albinism isn’t a big deal. Others with the condition face greater challenges. Some are ostracized by family, made to feel less-than and incapable. They don’t get the support they need emotionally and in their education to become successful, self-sufficient adults. I know first hand that the work NOAH does to educate parents, professionals and those living with the condition is vital to improving lives today and ensuring that future generations will be raised to be independent and successful.
Like most non-profits, NOAH produces a newsletter, and educational materials that are available in multiple formats and languages. There is also a web site that offers an online forum where people can ask questions or share experiences and receive feedback in real time. NOAH maintains a list of rapid responders around the country who can be in touch with people who are newly diagnosed to provided information and support. Every other year, NOAH hosts a national conference. Last July almost 1000 people descended on our Nation’s Capital to learn about the latest about genetic discoveries and low vision aids as well as share experiences.
This summer, NOAH will hold its 5th annual family camp. This year, camp will be offered in two different locations. Camp is a place where kids with albinism, just get to be kids. Indoor activities are scheduled at peak sun times and swimming takes place in the evenings. There are rock walls paddle boats, zip lines, archery and fishing. Kids bunk with counselors (most of whom have albinism or are directly related to someone who does). Parents have time to connect with other parents and watch their kids thrive. The experience is far more social than education, and yet much is learned in a very short time.
I’m great at doing on behalf of NOAH, I’ll write an article, make a phone call or speak on a panel. The one area I seem to falter is fundraising. I think it is because of my outlook. I don’t think having albinism is a big deal, the people around me know it isn’t a big deal so I’m loathe to ask for money for something that “isn’t a big deal”. Yet if I stop and think about it, it took a lot of work by a lot of people for my perception of albinism to develop to the point where is wasn’t a big deal. My mother knew nothing when I was diagnosed. There was no early intervention. There was no Internet. She asked questions and talked to eye doctors, teachers for the visually impaired and classroom teachers. She watched me an synthesized the information and made decisions. Was she always right? No but she had a pretty high average in my opinion.
Now I am a parent to two children who also have albinism. I can’t imagine what it must have been like for her to negotiate all this with little or no support. I know what is going on and still I bang my head against a wall. NOAH was founded so others wouldn’t have to walk this road alone, so parents could have information at their finger tips. So people with albinism could meet others with the condition sooner rather than later.
We’ve accomplished a lot, but there is more to be done. The condition is genetic so there is not “cure” and there are always new people being diagnosed. There are so many we haven’t reached because of distance and funding.
The fact that having albinism isn’t a big deal is attributable to my mother and NOAH. My mom set me on the right path and NOAH has introduced me to others with similar experiences who continue to educate me and enrich my life to this day.
Our family is hosting a skating party for NOAH this weekend. If you are local, please join us. If you can’t make the event but still want to support the NOAH, visit our fundraising page to make a donation. NOAH is a registered 501(c)3, so your donation is tax deductible.
While I have it good, it is vital that NOAH continues to educate and raise awareness so that others can experience independence and self-fulfilling lives. Your support is much appreciated.