Yes, he is very blonde, isn’t he?
This a common remark I seem to always make whenever people notice how very white Gilbert’s hair is – he has albinism, so it is as light as hair can be. Most of the time I don’t even try to go into the explanation about his condition, I usually just smile or make an innocuous reply and move on.
Sometimes, depending on the situation and the inquirer, I will explain that he has albinism and everything the condition entails – the vision impairment, sensitivity to glare, extreme risk of sunburn all year round and the nystagmus (the involuntary and constant movement of the eyes as they attempt to focus properly).
Albinism is an auto-recessive genetic condition that results in a lack of melanin (pigmetation) in the hair, skin and eyes of the affected individual. Gilbert received albinism genes from both myself and my husband (we have a 1 in 4 chance of the condition in every pregnancy). As a result he has pale skin and hair and has a significant vision impairment due to the lack of melanin present when his eyes were developing.
He will never tan, he burns easily even in winter and is badly affected by glare (photophobia). This is because his eyes can’t absorb light (due to the lack of melanin) and the light just reflects back out. This is why his eyes sometimes have a red or pinky glow. It doesn’t happen that often these days (he has lovely light blue eyes!) but when it does it is a bit disconcerting – hence the common myth that people with albinism have red or pink eyes.
The lack of melanin in the eyes also results in a significant vision impairment in people with albinism. For instance, Gilbert’s visual acuity has veered between 6/48 and 6/60 throughout his life (normal vision is 6/6) which is in the legally blind range.
He has no distance vision, little depth perception and has great trouble focusing properly due to the nystagmus. Yet, he walks unaided and is able to read and navigate daily life with the help of visual aides such as dome magnifiers, monoculars and the use of enlarged text.
Not many people know about albinism and it struck me the other day how very rare it is to find others with it. I was at an indoor play area recently with some friends and we were all amazed to see another little boy with a shock of white hair, tinted glasses and wearing long sleeves on a warm day.
I would have loved to have spoken to his mother but I didn’t get the opportunity – I am hoping she may have noticed my son as well and maybe felt that same feeling of “I’m not alone!” too.
Apart from my son, I have only seen a handful of people with albinism over the years – one was an attendee at a conference I attended a few months after his diagnosis. This was a pivotal moment for me as I realised the potential was there for him to be anything he wanted to be.
I suddenly believed he didn’t need to be defined or limited by his albinism.
It was important for me to see this potential and to pull myself out of the grief I had fallen into after being told my son would never drive a car, would most likely be legally blind and would always look different to everyone else.
7 years on, my son continually amazes us with his ability to cope with his vision impairment and the innovative ways he compensates for it. For instance, when we go out he will memorise the colour of my clothes so he can find me again if we get separated. Most of the time this works well for him but there have been some occasions where other women were dressed similar to me and he went and attached himself to a complete stranger instead of to me!
He was also very visually aware from the word go and used to love looking at text and logos from his earliest days. For quite some time we did not appreciate just how impaired his vision was as he seemed to be able to read a variety of signs and logos whenever we were out and about.
It wasn’t until he made some seemingly simple mistakes when trying to identify logos of similar shape, colour and size, that we realised he was just making an educated guess each time. He actually could not make out any of the detail in anything he was looking at.
Despite the odds stacked against him, he is a wonderfully intelligent and inquisitive boy who is starting to realise that he is a little different to everyone else. We are just beginning to really explain his condition to him as he naturally wonders why he always has to wear sunscreen, even when it isn’t sunny. And he wants to know why he has white and not blonde hair like his sisters and why he can’t see as well as everyone else.
He still doesn’t completely understand it all but we are hoping he will, in time. He has much to be proud of and we remind him of his gifts everyday, while also helping him understand some of the challenges that he will always face.
So that is Albinism 101 – I hope you enjoyed the lecture and that you help spread the word that people with albinism are normal, intelligent and engaging people who may lack pigmentation in their hair, skin and eyes, but do not lack for anything else.
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