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. Albinism is associated with a number of vision defects, such as photophobia, nystagmus, and amblyopia, and hypopigmentation (very pale skin) which means more susceptibility to sunburn and skin cancers.
Type 1 Albinism – no pigment at all in hair eyes and skin: white hair; pale lilac blue eyes; sight is significantly impaired.
Type 2 Albinism – small amount of pigment is present: very pale blue eyes; very fair hair and skin; partial sight; light protection from the sun; 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 1/4 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 hair and brown eyes.
Through schooling and college, people with Albinism need more support due to bullying and being vulnerable with limited sight, and they also can’t 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 sunshine, 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? These myths have been perpetuated for centuries, especially going back to the time of “freak shows”.
But we have a different and more informed world now. Things are improving for people with many disabilities through being open about their conditions, 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 1970s, but, it has got better and better as time has gone 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 gained 4 ‘A’ levels and have had a few different jobs. I have brought up 3 boys – one has autism, which has been quite a challenge. From around the age 14-15, 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), and made new friends. I have been a lead singer in many different bands, with 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 are both registered blind.
To finish, I think that being brave enough to be well-informed about my condition, improving my self-confidence, and making more effort to inform the public will really help in making sure Albinism and other disabilities are talked about openly, which ultimately helps in all ways.
Written by Samantha Cole, Weymouth