“Embrace your differences, believe in yourself and don’t give up”. These are just a few of the mottos that young Karin Boulton lives by. The bubbly and positive high-schooler lives with Albinism, and she does not let this stand in her way of socialising, making friends or playing sport. Today is International Albinism Awareness Day, a day that Karin believes is very important for changing people’s view on Albinism. We caught up with her to have a chat, to step into her shoes and hear why!
Hi Karin! You live with Albinism, could you tell us what that’s like?
Hello! Yes I do. To me Albinism isn’t necessarily a bad thing. In actual fact I embrace it. It can be seen as a good thing! Instead of people who live with albinism worrying about their flaws, we can stay positive and focus on the good in us!
You are so positive, Karin! What is special to you about Albinism?
One of the things that I find special about having albinism is my uniquely coloured hair. It is golden-blonde and I have ocean-blue eyes. This makes me feel special and makes me stand out from the crowd in a good way. I get complimented on my hair every day, which I find good for my self-confidence. I feel motivated to keep being proud of the person I am.
How does Albinism impact on your everyday living?
Having albinism has several impacts on everyday living. One of the main impacts since moving to high school and becoming a teenager, is socialising with people and making friends. When meeting new people, something as simple as smiling or waving at someone to get their attention is easy but for me this is not always the case. People with albinism can’t always see other people’s facials expressions or gestures, and sometimes we may not see them at all. People can often think you’re ignoring them. So it is harder to make friends.
Are there any times you’ve really struggled with Albinism?
One of the biggest struggles is feeling like you are different, and like you don’t belong. You can have feelings and questions because you realise you are different, like “when my friends and I go to the beach, why don’t I get a tan? Why do I have to sit at the front of the class and have my worksheets enlarged? Why do I have to put on sunscreen, a hat and sunglasses every time I go outside and no one else does?” It can be very difficult at times feeling different but it helps to connect with and know others who have shared experiences.
Do you think International Albinism Awareness Day can change the way people think about Albinism?
Absolutely! I wholeheartedly think International Albinism Awareness Day can change people’s views on albinism. There is a lack of education and understanding about albinism, and if we (people with albinism) work together we can teach others about albinism and hopefully change their views and opinions!
Is there one thing you want people to know about Albinism?
We are no different to you or anyone else. Do not be afraid or embarrassed about coming up to talk to a person with albinism, they will usually be happy and friendly and willing to talk about it if you ask them. It is important to treat everyone the same! So what, if people with albinism wear glasses, don’t catch a pass in netball, or have very fair skin? They are really just the same as you. It’s awful to judge and label people. Put yourself in their shoes, and treat them how you’d like to be treated.
Is there anything else you’d like to say?
Yes – to the other young people with albinism, don’t worry it is OK and you aren’t alone. There are hundreds of others out there who have been in your shoes and that can help. Don’t get me wrong, it can be hard at times, but don’t give up. Believe in yourself and be the beautiful human you are. It doesn’t matter if you are a bit different to your friends. Just be you and have faith!
Thank you for the chat Karin, Happy International Albinism Awareness Day!
Here are some facts about Albinism, to spread education and awareness this IAAD:
- 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.