U2Man said:
is there a history of albinism in your family?
None at all, though I do have a great-uncle who is quite pale and often mistaken for an albino.
yolland said:
I gather from a brief conversation I had with him once that this is characteristically associated with albinism, which was news to me--I'd always previously assumed it to be nothing more than a pigmentation anomaly. Are there other syndromes associated with albinism as well? What precisely causes it, and why does it affect anything beyond skin color?
Albinism and vision impairment go hand-in-hand. There are actually forms of albinism that only affect the vision and not the skin colouring (though I have the pale skin). Albinism affects the development of the retina and the nerve connections between the eyes and brain.
Besides the vision issues, I don't believe any other syndromes accompany albinism. The main medical worry for any albino is skin cancer and other skin issues related to the lack of pigment.
And I'll ask you the same question I asked Mr Green Eyes--how has this affected your needs in various commonplace environments like the classroom and/or workplace?
Well, I hate going anywhere unaccompanied if I don't already know my way around. So many places are just not designed with the vision impaired in mind - I'm sick of being unable to read signs. A good example is fast food restaurants with menus behind the counter: I can't read them whatsoever. So that has reduced my mobility somewhat.
In high school, I became a bit tired of people making an issue over my vision and albinism. I very much appreciate their care and thoughtfulness, but the constant "André, is this alright?", "André, can you see?", "André, is it shady enough?" sort of stuff ultimately led me to play down my needs at university in an attempt to be independent. It has largely worked. Whenever I find myself in a position of difficulty, I seek help - my mother made sure I was assertive like that from a young age. As long as I seat myself away from any sunlight, close to anything that needs to be read or watched, and have my monocular and glasses, I tend to be fine. My academic achievement certainly hasn't been hindered by either my albinism or vision - I currently have a GPA of 7 (though I suspect it'll slip down closer to 6.5 after this semester's results). However, I have been very reluctant to seek employment and have only held brief jobs.
To be honest though, albinism has actually had some considerable positives, especially at high school. I figure that I should make the best of a bad situation, and it certainly got me out of a lot of high school events I did not wish to do, such as inter-house sporting carnivals, compulsory Friday sport, and even fire drills (our gathering spot was in the direct sun on the oval, so I was allowed to go wherever I felt was shady enough)!
Plus, I like to make humour out of it. Whenever anyone complains about their skin being pale or being unable to get a good tan, I just tell them to stand beside me. I make anyone look dark in comparison!
Also, I'm guessing you probably have to be extra careful with sun exposure--does albinism strongly increase your risk of skin cancer or serious sunburn?
Oh yes, absolutely. I can tell some horror stories about sunburn. I'll spare them now, but one essentially left me in a cold bath for a week, while another resulted in me having to wear bandages on my arms for a couple of weeks and the burn itself did not fade for months - a year later, I could still show discoloured patches on my arm to a teacher to convince him that I should not participate in some outdoor event. Luckily, both arms have now returned to normal, some 4.5 years later.
I always have to carry sunblock with me when I know I'll be in the sun for a while, and I've had to take umbrellas with me to block the sun when queuing for U2. I forgot to take one for the concert in Brisbane and security's response really bothered me. For some daft reason, they decided to make us queue in the direct Queensland sun with no shade provisions at all (which just made things uncomfortable for everyone), and when I went to security, they initially refused to help me and took the attitude that I was trying to con them into giving me some special preferential treatment that I didn't deserve. Now, I can understand many medical conditions can be easily faked, but my albinism is pretty bloody self-evident just by looking at me! So I tracked down some doctors and they managed to persuade security that I had a legitimate condition (yes,
persuade; they initially tried to fob off the medicos too) and that I should be permitted to sit outside the line in the shade. Anyway, that's my disgruntled rant.
MrsSpringsteen said:
I hope it's ok to ask this honest question, no offense intended
Do you feel as if people stare at you too much because of your looks? If so, how much does it bug you?
No offence taken whatsoever.
With my vision, I'm obliviously unaware of anyone staring at me. Occasionally, my friends/family have pointed out someone staring, but it's usually just been little children and that doesn't bother me at all. Little kids stare at anything and I'll just smile at them.
I think nowadays, people notice me more because of my hairstyle than the actual albinism. Because I've tried to cut costs, I haven't had my hair cut much regularly, which has meant it has grown into a mini-afro quite reminiscient of the one Adam Clayton has on the cover of October. I can't decide if it looks cool or abso-bloody-lutely ridiculous!