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Step into Harry’s shoes: living with Albinism

in Latest News, Stories of Independence

Welcome back to our collection of Stories of Independence. Guest writers are invited to share their own personal experiences, or express their views on the world around them. Tomorrow, 13 June, is International Albinism Awareness Day. Below, eighteen-year-old UWA medicine student Harry writes about his experiences living with Albinism.

Through sharing this experience, we all have the opportunity to explore the way we look at inclusivity. We can step into someone else’s shoes.

Harry, right, pictured with friends at the International Albinism Awareness Day event at VisAbility
Harry, right, pictured with friends at the International Albinism Awareness Day event at VisAbility

Watch out Easter and Christmas there’s a new day capturing hearts across the globe.

International Albinism awareness day is one where we should all enjoy white chocolate and cauliflower (albino broccoli) and celebrating albinism.

My name is Harry Nicholas, I am 18 currently studying medicine at UWA. I graduated year 12 last year and finished up with a 99.15 ATAR after one of the best and craziest years of my life. I do cross country running occasionally and play piano without much skill.

I have Albinism and 10% vision, I describe my sight as like looking through an old low quality TV. You’ll never see me out without sunglasses.

Living with Albinism has both high and low points.

After vowing to not get a haircut after graduation, my mop of white hair attracts a lot of attention. I consider it a compliment whenever someone stares at my hair searching for some colour or grabs it just to make sure it’s real. Although being this recognisable does make it tricky whenever I try and do something naughty.

Living with Albinism can be challenging when out in public and searching for friends. I find it difficult to recognise people from afar and am disappointed if I ever find out someone has seen and waved without me noticing.

Dealing with the sun can be tricky because I burn instantly but it still doesn’t stop me spending all summer at the beach: slip, slop, slap, seek, slide!

I find there’s a lot of confusion when it comes to albinism, I’ve been told before that I can’t be albino because my eyes aren’t red.

When going to my first finance tutorial my tutor stared at me in shock for a minute. At school, teachers would forget to enlarge worksheets more often than not. But I never let albinism restrict my academic ability.

Having Albinism can be frustrating at times but you have to take the good with the bad. I always try and look at the positive side and try not to let things get me down. I have embraced the whole idea of being different and am not shy when it comes to talking about Albinism.

So what is Albinism?

Albinism is an inherited genetic condition that is passed on by both parents. People with Albinism do not produce the melanin pigment responsible for the colour of eyes, skin and hair.

Albinism occurs across all ethnicity and racial groups throughout the world. As Albinism is a recessive gene, most children with Albinism are born to parents with normal hair and eye colour.

Albinism can affect hair, eyes and skin (Oculocutaneous Albinism) or just eyes (Ocular Albinism). Most people have blue eyes, but some are hazel or brown. Hair colour likewise can range from white to brown. There is a myth that people with Albinism have red eyes. This is not strictly true, but in certain light the red of the retina can be seen due to the lack of pigment in the eye.

People with Albinism also have vision problems. The cause is the abnormal development of the retina and abnormal patterns of nerve connections between the eye and the brain. The degree of impairment varies from person to person.