Frequently Asked Questions

Over the years, I have been asked a lot of questions about my Albinism. Recently, a few students from all over the world have been doing reports on Albinism and I have been answering questions via e-mail for them. There have been some very good questions and I think they are well worth sharing with the rest of you. Here are some of the most common questions I have been asked.

Q. How do you feel about the term, "albino"?
A. This is a very good question. Let me point out that not everyone that has Albinism feels the same way about this issue. Some are perfectly fine with being called an "Albino". Others, including me, don’t prefer the term. We don’t feel that it’s right to label someone by their race, condition, state of mind or health. People with mental challenges don’t like to be called "Retards". This method of labeling people that are, in society’s eyes, "not normal" puts their condition ahead of their human status. They are then looked upon as some sort of alien. I have no problem with my condition, but when someone calls me an "albino", it’s almost like they’re implying that I am something less than a whole person, and therefore do not deserve to be referred to as such. In my eyes, I am not an "albino", I am a PERSON first and foremost, who has Albinism.

Q. How do you respond and/or feel about people's negative reactions towards your condition?
A. When I was younger, It bothered me very much. I felt left out and defective. Now, as an adult, I realize that it is people’s ignorance and/or lack of self confidence that causes them to react in a negative way. I feel sorry for them. Sometimes, snide remarks emanate from passing cars. This is a cowardly way of confronting me with the fact that they don’t agree with my appearance. I would much rather they stop and take the time to ask me why I look different. I should point out that most reactions I get from people are not negative at all. I think society has come a long way in accepting deviations from the norm.

Q. How was high school for you?
A. The answer to this question could take a whole page. I don’t actually think that the way I was treated was completely due to Albinism. It was the whole package of a guy with white hair and large glasses who wasn't too athletic, had an acne problem, didn't join the bush parties or the Monday morning hangovers. The teasing was more directed toward my "Nerdy" tendencies, than my white hair. I was head of the Video and lighting crew, not the captain of the football team. I did have a lot of good friends outside of school who I partied with, but the social scene at high school was not something I was able to grasp. It was nice to graduate, let me put it that way.

Q. How far can you see?
There is both a short, and a long answer for this one. In short, I can see the sun which is several hundred million miles away. The long answer is too long to describe with words. Here are two pictures:


If I look at this picture at about 12 inches away from my screen....	It just looks like this to me.

If I move closer, the image is spread over a wider area of my eye, thus improving the resolution. For me, the image on the left comes into crystal clear view at about 3 inches away. This is not to be confused with being nearsighted, which can simply be corrected with glasses. Everything looks clear to me. Things just need to be big for me to make out the details. If the screen were big enough, I could watch television from a block away. From across the room, my 28 inch TV just looks like a square light with barely recognizable, colored shapes. I can't recognize faces, but I can tell that they are faces. My vision is about 10 / 200, meaning that what I can see at 10 feet, most people can see at 200 feet. I need to bring things closer to me via telescopic devices and magnifying glasses in order to see them normally.

Q. Does everyone with Albinism see like this?
A. Most people with Albinism share the same types of conditions with their eyes, however, how each person sees the world must be different than the others. I'm quite sure that there must be different degrees of visual impairment involved and differences in how well each person adapts to the situation. On the whole, I would guess that most people with Albinism see things much the same way I do, but because it is so hard to describe how I see things to you, when I have no idea how you see things and therefore have nothing to compare to, there would be no way to tell how many Albinism cases share the same visual perception.

Q. How many fingers do I have up?
A. There are many ways to answer this question, one of which is to ask the same question back while holding up my middle finger. :-) ... (Please, don't ask a visually impaired person this question.)

Q. Do you have brothers or sisters with Albinism?
A. I do have one brother and one sister, but neither of them have Albinism. Although they carry the gene for Albinism, it did not manifest in them. It is decided during mitosis (immediately after fertilization) whether or not a person will have Albinism. Both parents must carry the gene for Albinism to occur in offspring, and even then, there is only a one in four chance of it occurring.

Q. Can you go outside in the sun?
A. Yes, but I have to be very careful not to stay out too long, or to wear a strong sun block. The lack of melanin in my skin causes it to burn very easily in the sun.

Q. How does it make you feel when people stare at you?
A. On one hand, I understand what it's like to see something different and want to look at it for a while. On the other hand, people forget that while they're catching an extended glimpse of a rare sight, they are also creating a very uncomfortable situation for the person they are gawking at. If I go to the mall, right now, and stare at someone who is sitting, eating a burger, do you think that would make that person feel uncomfortable? Sure it would. Just because I have white hair doesn't mean that I deserve to put up with being stared at.

Q. I have Albinism too. What should I do when someone stares at me?
A. I can't tell you what to do. I can tell you what I do. I stare back. They quickly look away but I keep on staring for a few seconds. By doing that, I've taught that person how it feels and maybe next time they stare at someone, they'll think twice. Children are different. You have to be careful in that area and understand that they probably don't know any better, which is not their fault. It is the parents' responsibility to teach their children that it is not nice to stare. When I am out with my children and I see someone who looks different, I am sure to keep an eye on my kids so that if they stare, I can correct them. When we get home, I explain to them why it's not nice. Kids have feelings too, and if you just explain things to them, they usually do quite well in remembering next time. Nevertheless, when a child stares at me, I either stare back, or walk to a place out of their site, like to another isle, or behind something.

Q. I have a 3 month old relative who suffers from this disease. Is there any treatment or cure for it?
A. Before I answer this question, I must clear a few things up. Albinism is not some deadly deformity that is cast upon people like a curse. It is not a disease that requires life sustaining medication. It is quite simply a condition affecting the color of the skin and hair, and one's eyesight. When you have Albinism, your skin is white, your hair is whiter, and your vision is, more or less, crappy. That is all. No internal organs are affected and there is no health risk or threat of early death. Most of the problems with Albinism are not because of the condition, but because of society's reaction to it. Social ignorance is the worst symptom of Albinism. So, your relative who you say "suffers" from Albinism will only do so if the people he meets throughout his life cause him to. At only 3 months old, he's NOT suffering, trust me. I can't say I ever suffered from having white hair, or impaired vision. Also, the word "disease" bothers me a bit. I don't know exactly what the definition of the word is, but in my mind, I most definitely am not a person with a disease. Now, there is no cure for Albinism but treatment includes as many visual aids (sunglasses, corrective glasses, magnifiers and small telescopes) as the person needs. A strong sunscreen is a good idea since people with Albinism burn easily in strong sunlight. The last, but not least very important treatment is for that person to be aware that he/she is not alone in this. Using the internet, it is easy to find information about Albinism and talk to others about their experiences. Finding out that there are others who share your thoughts ALWAYS helps.

Q. How often does Albinism occur?
A. About 1 out every 17,000 people in the U.S. has Albinism. Cool eh?