Demystifying Albinism: Seeing Red

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

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30 Responses

  1. I didn’t realise it effected the vision (effect the noun, right?). It’s amazing how little you know on things until someone explains.
    Lydia C. Lee recently posted..Sing, Sing a Song

    • Kirsty says:

      Lydia, I would have gone for affected there, but that’s just me! 😉

      Vision loss is one of the main challenges that comes with albinism. My son compensates so well considering his base vision loss and the nystagmus and photophobia on top of that. When you put it all together is really does represent a significant challenge but he does so well to navigate the world around him, as do many others with the condition.

  2. iSophie says:

    My Dad is legally blind now (due to a degenerative condition), but he did have good vision most of his life. I cannot imagine someone so young dealing with that, he is a very strong little man.
    iSophie recently posted..To excavate or obliterate, that is the question.

  3. That must have been hard for you to learnt that his loss was that significant. Does he have glasses that can correct for most of it?
    EssentiallyJess recently posted..One Step Closer #IBOT

    • Sharla says:

      Hi, im another parent of a toddler with albinism. Glasses cannot correct the main eye issue with albinism. It can sometimes help with the crosseyednsss and other normal eye issues you or I will face (near or far sighted, astigmatism, etc) but the base issue is uncorrectable because it is in the wiring to the brain and lack of/little macula, not in the lense of the eye. Hope that answers your question!

    • Kirsty says:

      As Sharla mentions in her comment, glasses can only correct minor issues, not the main cause of visual acuity loss in albinism. Gilbert has got to the point where he no longer wants to wear his glasses as they don’t really help him see any better. For me it’s quite heartbreaking to know that there is nothing we can do to improve his vision but I’m so proud that it still doesn’t stop him from doing most of the things he wants to do – he is one determined and focused boy!

  4. What a great post Kirsty! Thankyou so much for sharing your knowledge.

    Albinism isn’t something people that aren’t affected by know much about. So I think it’s great that you share all the things you have learnt along the way with Gilbert.

    Fantastic post hun 🙂

    MC x
    #teamIBOT
    Miss Cinders recently posted..i must confess – pet peeves

    • Kirsty says:

      Thanks MC – that encourages me to keep going with these posts. They are exactly the sort of thing I would have loved to have read when we first received his diagnosis, but I could be slightly biased there!

  5. Great public service you are doing Kirsty – I think more people need to read this! Em x
    Emily @ Have a laugh on me recently posted..A list of parenting books that no one will ever have the guts to publish

    • Kirsty says:

      Thanks Em. In my experience there really isn’t much knowledge out there about albinism, precisely as it is so rare. If I can do my small bit to raise understanding and awareness for my boy, I will be one happy mama!

  6. Tegan says:

    Wow I had no idea about all of the vision stuff. Thanks for explaining it all, I look forward to reading more. Your son is lucky to have you in his life advocating for him xx
    Tegan recently posted..The Wanker Effect

  7. Rosaleen Dempsey says:

    Great article Kirsty. This is auth we need to debunk. Just wondering if you could also include the Albinism Fellowship (UK & Ireland) on your links at the bottom http://www.albinism.org.uk

    • Kirsty says:

      Thanks for that Rosaleen – I will add that link in right now. If you have any other links that should also be shared, please let me know!

  8. Rina says:

    This is a great source of information about Albinism. Something I have never thought about deeper. Thank you for sharing this dear. Your son is lucky to have loving and devoted mother like you 🙂
    Rina recently posted..Moving Out at Last

    • Kirsty says:

      Thanks Rina – you are not alone in not thinking too much about albinism, it’s not something that you would think much about until it affects you personally. I just want to try and get some truths about the condition out there and start debunking the myths. Thanks for taking the time to read and comment!

  9. Rhianna says:

    I love the way you are sharing this and the great attitude you guys have about the cards you have been dealt.

    Fairy wishes and butterfly kisses to you and your wonderful Gilbert
    Rhianna recently posted..AntiOx Fruit Bars and Chocolate. {Giveaway}

  10. Emily says:

    Wow, great post and thanks for sharing. I certainly had no idea about a lot of this information.
    Emily recently posted..Food Glorious Food

  11. Yam says:

    Hello Kristy,
    My name is Yam and I’m an albino from Israel.
    In Israel, there is almost non awareness of albinism and it’s really hard for me and people like me to live in this way.
    because I’m only 15 I can’t do almost anything about it but I’d really like to talk with someone who understands my condition.
    Thanks a lot,
    Yam Ben David
    p.s.
    there’s my email address- jodi1040@gmail.com i case you’ll want to talk cause I’d really like that 😀

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