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.

Gilbert

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 real face of albinism

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.

With King Julien on our RCI cruise - www.myhometruths.com

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.

Master Six - www.myhometruths.com

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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8 Responses

  1. My son has not got albinism but has nystagmus after being born with fluid on the brain which needed a shunt when he was a week old. He too will be unable to drive a car and whilst he copes exremely well it is starting to become obvious that team sports and the like will be very hard for him. (he is 10 now) Despite having surprisingly good hand /eye coordination which I put down to hours of practise with his dad, he is now struggling more with the speed of these games and differentiating the players on the field as I imagine they are all a blur as they run past him! Even so he has a great personality and copes so well. We are now concentrating on all the other wonderful skills he has and have quite consiously not made a huge deal of his vision impairment. It is sometimes hard for us to watch as his younger brothers surpass him in many areas but they too are so great with him (and will have to end up driving him around too!)As you said it is important to remember that these impairmants do not need to have to stop them from achieving many wonderful things, and often even more as they have greater resilience and coping skills than most to enable them to deal with lifes challenges. I met a couple of albino kids a few years ago at a Vision Australia function which was when I first realised the strong connection between nystagmus and albinism. Anyway thanks for your post, it is always great to give people a better understanding of some of the many issues out their facing our kids and their parents.

    • admin says:

      Thanks for your comment Martine. My son hasn’t tried team sports yet (he is learning to swim though) but I would love for him to give something a go one day, as long as he wants to. I know that I can’t limit his opportunities – he is learning the piano at the moment, and despite difficulties reading the music, he is managing by just learning to remember by ear! I know of a few other kids who have nystagmus but not albinism through Vision Australia and the Royal Institute for Deaf and Blind Children who have provided invaluable support and assistance from the time he was 3 months old. I’m really glad to hear your son is thriving as well!

  2. katepickle says:

    I am a new reader to your blog and just wanted to pop in and say hi and thanks for sharing this post!

    Both my boys are very VERY fair, but they do not have albinism, yet we are constantly stopped by strangers to ask if they do and often find strangers arguing with me when I tell them no. So it’s really helpful to know more about albinism so perhaps I’ll have a better chance at explaining.

    I can only imagine how many crazy comments you must get!

    • admin says:

      Thanks Kate, we do get some insensitive comments occasionally but I think we are saved a lot of the time as my son wears a hat constantly so his hair isn’t always visible! Thanks for stopping by, I hope you can throw off the next unwanted comment with some choice albinism-science terms!

  3. Louisa says:

    Thanks for this post and for sharing some of your story. I’ve not had any experience with albinism and it’s really helfpul to understand some more.

    • admin says:

      Thanks Louisa, I hadn’t had much experience with albinism either before my son came along – it’s been a steep learning curve. But one of the main things I want to do with this blog is increase awareness and acceptance for both autism and albinism – hopefully, in my own small way, I will be able to help that along. Thanks for reading and commenting, very much appreciated.

  4. Alison Jack says:

    Thank you for this post, and all your blogs on albinism. The lead character of my début novel, a young man called Louis, lives with albinism. I have done lots of research into the condition, but I may have slipped up on details from time to time. Hopefully those who live with albinism will forgive these slip ups and enjoy the fact that Louis is a very likeable and very normal guy, who just happens to wear dark glasses and a lot of sun block! As I don’t actually know anyone with albinism, personal experiences such as you have shared have been invaluable in my attempt to make Louis as realistic as possible.

    • Kirsty says:

      That is fantastic Alison – I would love to read your novel, please let me know where I can access it. And if you ever want to find out more about albinism don’t hesitate to shoot questions my way!

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