Help! My Daughter’s an Albino – Living with Ocular Albinism

It’s soon approaching International Albinism Awareness Day 2018 (Wednesday 13th June) and so to mark this occasion I wanted to write about something deep and personal. I want to tell you about my girl who has a rare form of albinism.

Why write about these experiences? Is there catharsis in it for me? Perhaps. But I also want to reach out other Dads who are going through the same journey. Maybe you’ve recently discovered your child has albinism. Or you’d wondered what it was. I hope these words can give you reassurance and the attitude that it’s not a big deal.

First Up – What is Albinism?

OK, so what exactly is albinism? When you think about an albino, what’s the first image that comes to mind? Is it the albino in The Princess Bride? Or the twins in The Matrix Revolutions. Or the evil masochistic monk it The Da Vinci code (ever notice how albinos are always the creepy bad guys?).

Albinism is pretty rare and affects around 1 in 20,000 people. There are two main types of albinism:

Oculocutaneous albinism

This affects the hair, skin and eyes and there are different types of Oculocutaneous albinism (OCA) which affect different people from different racial backgrounds in different ways. I learned a lot reading this article.

Ocular albinisim

This is a rare form of albinism which is found mainly in men. It is a genetic defect with the result that the retinas (the bit of your eyes that make the pictures) have no pigment. There is no difference in the colour of hair, skin or eyes. This is the type of albinism that my daughter has.

Because this type of albinism affects your vision, this can appear as:

• Crossed eyes or a squint
• Sensitivity to light
• Impaired vision
• Astigmatism (A condition that reduces your ability to focus. I have this and now wear glasses to correct it. )

When I was first told by the doctor of my daughters albinism, I was shocked. She’d started wearing glasses for a squint but on closer examination it showed that she had no pigment in her retinas.

We were told that it was likely that both me and my wife have a suppressed gene which has manifested itself in our girl. She now wears glasses that have corrected her squint and we’re learning to understand what this will mean for her life.

What Are Peoples Reactions to Ocular Albinism?

I’ve had a whole range of reactions in telling family members and friends about my daughter’s condition. Some look at you blankly like they don’t understand what you’re telling them (What? You’ve never seen The Princess Birde?).

Others start telling you about how they saw this interesting feature on Discovery about the persecution of black South Africans with albinism and wasn’t it a shame and did you see it?

Your job when this happens is to smile politely and say “No, I missed that. It sounds interesting.” and wait for the subject change.

All of these reactions are fine. The hardest one is disbelief – when people who know my daughter think I’m making stuff up by telling them. I mean she seems so, well, normal. And she is in every other way (well, for a three year old anyway).

Living as A Family with Ocular Albinism

Since the diagnosis around six months ago (we started with glasses before that), things haven’t really changed much. It’s helpful knowing and understanding her condition so that we can help and support her as much as possible (see the next section for more).

The glasses have corrected her squint and she’s good at wearing them. It takes discipline to make sure she wears them all the time but a combination of Disney Princess frames and the fact that Daddy got glasses too now has helped with this.

It’s possible that she will develop a sensitivity to bright light in the future and we’ve seen signs of this. This can be helped with tinted lenses in her glasses.

To be quite honest, it’s not really been a big deal and we’ve eased back into normality. I do wonder about when she’s older and begins to understand more about the condition. It also makes me sad to know that she’ll never be a fast jet pilot (her mother is relieved though).

I’ve often thought about what I want for my daughter(s) and her being a pilot (or any other profession) isn’t the hook on which I’ll hang my coat of happiness. If she’s happy, loved and healthy – that’s all I want or need.

Your Child Has Been Diagnosed with Ocular Albinism – Now What?

So you’re reading this because you Googled something like ‘What is Oculur Albinism‘. And you Googled it because your son or daughter was just diagnosed with the condition. What do you do now?

1. Be patient

Before getting glasses, my girl was clumsy – always bumping into furniture, walls. She’d also drop things. Now that I understand what is causing this, it’s important to be patient. The glasses help, but understanding that her vision is limited without them takes adjustment.

2. Be tuned in

A while ago we were sitting in the garden. She started complaining about the sun in her eyes – it was a bright day. We got her brother to change places with her so it wasn’t full in her face. It takes effort to remember these things – like sunlight could bother her, or that she has limited vision without her glasses. Being tuned into this and compassionate is an important adjustment that you make.

3. Don’t make ocular albinism a big deal

It’s a proven psychological phenomenon that the way you view others affects their behaviour. This is true in general with your kids  – expect good behaviour and you’ll be rewarded with it. The same goes for your child’s albinism. If you make it out to be a screaming big deal, they will inevitably pick up on that. Why not be more relaxed about it – with modern medicine, it doesn’t have to be a disability if you don’t let it.

Many people with learning difficulties such as ADD or dyslexia speak about ‘seeing’ the world differently through their differences. Why does albinism need to be seen as a disability? If it helps your child understand who they are and the world in a different way, maybe that’s a super power?

Don’t Fear Different

Finding out about my daughters ocular albinism felt like a blow at the time. But it quickly becomes the ‘new normal’. That’s my advice to you – don’t freak out. Don’t treat it like it’s the huge massive deal. Your kid does have a future in whatever career they choose. And if any of those don’t work out, at least there’s Hollywood villanry…

Neil.

P.S. Did you know I wrote a book on Fatherhood? You can buy it here (Amazon)