One of the biggest and most enduring myths about albinism centres around the colour of the eyes. The stereotypical view is that people with albinism (PWA) have red or pink eyes.
“Will he have red eyes?”
I must admit that was the first question I asked our opthalmologist when we received our son’s albinism diagnosis. It was one of the only things that I thought I knew about the condition. So it’s no surprise that many people share the same belief.
But it’s actually not true.

child with albinismimage source

PWA actually have eyes that range from blue through to brown. However, the lack of melanin (pigmentation) that characterises the condition, means that light is not absorbed so well by the eyes and is instead reflected back out, which sometimes leads to a reddish glow in certain lighting conditions.

I remember when my son, Gilbert, was a baby. In the early days, he would spend hours laying on a mat or in his rocker or in our arms.  There were many times that we would be surprised by his eyes appearing to glow red as the light bounced back out of them.

Gilbert

It tended to happen when you least expected it and at times it was quite disconcerting. But it’s extremely rare nowadays for us to see this glow – his eyes are actually a beautiful pale blue and it’s normally only in photos that we notice a reddish hue.

In fact this is why a lot of his baby photos have the absolute worst red eye – not even the red eye adjustment on modern cameras can reduce this effect in some of those photos. Much like the photo below:

albinism-4image source

The lack of melanin in the eyes also leads to other vision issues for PWA.  In albinism, the retina (more specifically the part of the retina called the fovea) cannot properly absorb light while the routing of the optic nerves are also affected, which means that signals coming in from the eyes are not correctly carried to the brain.

As a consequence, most people with albinism have significant vision loss. My son is considered legally blind – his current visual acuity is 6/60 (equivalent to 20/200 in the US) while a lot of other PWA have more severe vision loss. For some idea of what being legally blind is like, check out this demonstration – it is based on having cataracts but it does show a loss of acuity and focus that is similar to being legally blind.

PWA also suffer from nystagmus, where the pupils move involuntarily as the eyes struggle to find a point to focus on. It can be disconcerting to see this initially but I must admit that I don’t even notice my son’s nystagmus any more.

PWA sometimes also suffer from strabismus, where the eyes are not properly aligned with each other (giving the impression of being cross-eyed or squinting) and also have problems with depth perception which can make it difficult to navigate stairs and uneven ground.

Photophobia, a condition where the eyes are particularly sensitive to glare is also common in albinism. This is another consequence of the lack of pigmentation in both the iris and in the retina leading to excessive amounts of light being taken into the eyes. Another reason for the enduring myth of PWA having red or pink eyes.

As you can see, vision impairment and the associated visual difficulties that often come with an albinism diagnosis, present significant challenges for PWA. It’s  a pity that this truth is often lost amidst the other myths surrounding the condition.

You can find links to my other posts demystifying albinism below:

Demystifying Albinism: The Power of Popular Perception

Demystifying Albinism: Shades of Pale

Demystifying Albinism: Skin Deep

Demystifying Albinism: Real Life Role Models

Albinism 101

The Real Face of Albinism

I intend to further discuss the individual aspects of albinism in future posts but if you have any particular questions you would like me to address, please leave a comment to let me know. I am more than happy to share my knowledge if there is any chance that it can increase awareness, understanding and encourage greater acceptance.

You can also find out more about albinism by following the links below – they have been great resources for us and will definitely help others either needing or wanting to find out more:

National Organisation for Albinism and Hypopigmentation (NOAH)

Albinism Fellowship of Australia (AFA)

Albinism Fellowship (UK & Ireland)

Vision Australia 

Under the Same Sun

Support is so important when you're a special needs parent

 

Subscribe to receive understanding, support and advice from a fellow special needs parent. It can be a lonely and overwhelming road but it's easier when you're not walking it alone. Let's work together to find the positives and help you and your family live a more empowered life.

You have Successfully Subscribed!

%d bloggers like this: