Albinism – an insight
Albinism – not albino please! Albinism, is the name of a group of conditions carried by the genes, not producing the pigment “melanin”. “Melanin” is produced under the skin by “Melanites”. The conditions are: visual impairments, little or no colour in eyes and hair, very pale skin (hypopigmentation) no protection against UV in the skin. There is type 1 Albinism, no pigment at all in hair eyes and skin. White hair, pale lilac blue eyes. Sight is significantly impaired. There is also type 2 Albinism, where a small amount of pigment is present, very pale blue eyes, very fair hair and skin. Partial sight. Slight protection from the sun, and better eyesight. Eyes only appear red if a bright light is shining into them.
Both parents will carry a recessive gene for Albinism. But, usually don’t even know they carry it, as they probably have brown hair, brown eyes (for example). There is a 1 in 4 chance of each child having Albinism. If only one parent carries the gene, none of the children will have albinism, but the gene does get carried on. Roughly 1 in 20,000 people have Albinism, so it is fairly rare. My parents both had brown, brown eyes. Albinism occurs in fish, mammals birds and all.
Through schooling and college people with Albinism need more support due to bullying, and being vulnerable with limited sight, and cant stay out in the sun unprotected. A good factor 50 will be useful. A cap with a brim will help with glare, and dark glasses can ease the pain from light flooding into the eyes. Children with Albinism should be well informed about their condition, learning to cope with sun, low vision aids, and self esteem, and having the strength to talk about their needs to others.
There are some strange myths about Albinism, which would have come about from ignorance. Are they from outer space? Are they vampires? Especially going back to the time of “freak shows”.
But we have a different more informed world now. Things are improving for people with many disabilities through being open, and many people with Albinism have done modelling, magazine shoots, got degrees and high powered careers.
My life with albinism, was quite difficult in the 1970’s. But, it has got better and better as time goes by. I went through local primary, then chose a special school for blind people for my senior years (as there was no support whatsoever at local school). I have 4 A levels, have had a few different jobs. I have brought up 3 boys, one has autism, quite a challenge. From around the age 14 to 15, I decided being reserved and quiet, wasn’t necessarily getting me noticed.
I became a punk, making use of my unique colouring (or lack of), I made new friends. I have been a lead singer in many different bands, my white hair being a very useful asset. I have modelled for Diesel jeans, and Liberty of London. My brother did years of modelling, he had gorgeous very long straight white hair down his back. We both are registered blind.
To finish, I think that being brave enough to be well informed about my condition, improving my self confidence, making more effort to inform the public, making sure more Albinism and other disabilities are talked about all helps in all ways.
Written by Samantha Cole, Weymouth