Happy International Albinism Awareness Day! Since 2015, the United Nations has recognised this day as a global event, occurring on June 13th every year. This years theme is “United in making our voices heard” so this blog post and associated ramblings on Instagram will be how I’ll add my voice.
I was born with Type 1 Tyrosinase Negative Oculocutaneous Albinism and at the time, my parents knew very little about the condition. The title of this post comes from the title of the magazine article they were given in the hospital when I was born. This was 30 years ago (nearly 31 – HELP), so the wealth of information available at our fingertips now, just didn’t exist back then. It was a scary time for them as they wondered if I would see at all, could I fully participate in school, would I make friends, have a partner or have a job? I can say now, that YES I did all of those things, but who was to know at the time?
I was referred on to a fantastic ophthalmologist and my parents and I received great support from the National Council for the Blind of Ireland (NCBI) throughout childhood. I continue to receive great support from the NCBI to this day.
Albinism is a rare genetic condition which affects the skin and/or eyes of the individual born with it. It is a life long condition, with no known cure and comes in three forms;
- Type 1 Tyrosinase Negative Oculocutaneous Albinism which affects a persons skin, hair and eyes. People with this form (like me!), cannot produce any melanin in their skin due to an abnormality in their genes. This means that they have very pale skin and hair, along with a visual impairment, photophobia and a nystagmus
- Type 2 Albinism is similar to Type 1 but people with this type have some melanin in their skin. This means there hair is very light blonde, they have pale skin, but not as pale as those with Type 1. Their eyesight is less impaired but they usually have a nystagmus
- Ocular albinism affects the eyes in the same way as Type 1 and Type 2 but the skin is not affected.
Albinism affects 1 in in every 17,000 people in Europe / North America and up to 1 in 1,000 people in parts of Africa. In an Irish context, that means that there are about 300 people in Ireland with the condition (Irelands population as of April 2021 is 5,011,500 according to the CSO). Both parents of a child with Albinism must carry the gene mutation for it their child to have a 1 in 4 chance of being born with it – so its pretty rare and pretty random!
As Albinism is a condition I was born with, I really don’t know any different. It affects me a in a number of ways;
- I have very pale skin, hair and eyes due to having no melanin which is responsible for skin, eye and hair pigmentation. My hair is as blonde as hair can get and I’ll never go grey. My skin is also as pale as it goes which throws up the challenge of trying to find make up that is the right shade! At the moment, I am loving Tint and Glow by Sculpted by Aimee. I wear shade 1.0. Gone are my days of 90’s orange foundation
- Very sun sensitive skin – due to having no melanin, my skin cannot absorb UV rays from the sun and protect me from sun damage. This is where a good SPF comes in – I am usually covered in the stuff when it is sunny out. I have found La Roche-Posay Anthelios SPF 30 or SPF 50 to be the best. Thankfully I live in Ireland where we only get proper sun for maybe a week a year
- I am visually impaired – I have 6/36 vision with glasses which means I have to be 6 meters close to something a fully sighted person can see at 36 meters. This means no driving. I also have an underdeveloped macula (the part of the eye responsible for seeing detail), so my detail vision isn’t the greatest. Hence why getting behind the wheel of a car is a recipe for disaster
- I have a nystagmus which is characterised by involuntary twitching or movement of my eyes. My brain compensates for this and corrects the movement so I don’t see the world constantly moving. Imagine the motion sickness if I did. This part of my Albinism gets worse with stress and fatigue and can be hard to manage at times. The best way I have found to manage this is to lie in a dark room for a while
- Photophobia – due to the lack of pigment in the irises in my eyes, they let in too much light which means I am quite sensitive to bright light and abrupt changes from light to dark (like walking under a shadow of a tree). This is the part of my condition that I find the hardest to deal with. It often leads to headaches and fatigue, which is why I find driving days in the van hard as the cab lets in LOADS of light, even on an overcast day.
How does this affect me in my day to day life?
As I have had this condition for my entire life, I have found many work arounds for the challenges it sometimes presents. I emphasise the sometimes as all in all, I can do nearly everything I want to do. I never felt like I lost out on anything growing up, I took as many opportunities as I wanted and made the most of the times when I did have to make an adaptation to something. I was useless at ball sports but did them anyway for the fun of it. I spent the majority of my teens and early 20’s working with and riding horses, one of my great passions in life.
In fact, I think it has given me more things than it has taken away. I have written about everything it has taught me here.
Misconceptions and FAQ
Thankfully, I can count on one hand the amount I times I have experienced overt negativity due to having Albinism. Most of the time people stare a bit or do a double take due to my blindingly pale skin (especially in mainland Europe amongst all the lovely tanned people here). Here’s a sample of the most common questions (with answers) I’ve been asked over the years;
- Does anyone else in the family have it? No, I am the only known person in my close and extended family
- Why aren’t your eyes red? This is a misconception. My eyes are just really pale and can look red if a light is shone directly in them
- Can she hear? This is one my dad was asked about me when we were out together. Yes I can hear, probably a bit better than others as I rely on it so much to get around. My mum says I have supersonic hearing
- Why don’t you wear tinted glasses? This is a choice my parents made when I was a child, and I still don’t wear them now. My parents thought that tinted glasses might make my eyes even more sensitive to light, so we opted for non-tinted lenses. I have prescription sunglasses which I use from time to time if it is really sunny. I prefer to wear a cap instead of tinted lenses as it also protects the top of my head from sunburn and I can easily take it off when walking through a darker area
- Do you wear SPF every day? Yep, but mostly because I am a human, and we should all wear SPF on our faces every day. I am covered head to foot in the stuff when I am out and about in direct sun but I do give my skin 20mins without it even in sunny climates to soak up the vitamin D!
- Do you have to avoid the sun at all costs? No, but I do have to be careful. I wear SPF if I’m in direct sun for more than 20mins and I stick to the shaded spots as much as I can.
In comparison to other peoples experiences, the above is quite light and easy to deal with. Parts of Africa have a historical and current culture of persecution and discrimination against people with Albinism, due to the belief that people with Albinism have supernatural powers and bring misfortune to their families. In addition, life expectancy can be much, much lower due to inadequate skin care, education and the extraordinary exposure to the sun due to the climate they live in.
I can categorically confirm that people with Albinism do not have supernatural powers. The only supernatural power I have is the ability to eat an entire share size bag of crisps in one go. I don’t bring misfortune to my family with the exception of some very bad jokes. I also inherited my dads sense of humour as well as his wonky genes.
In an Irish context, some people have reported facing much more discrimination then I have. The worst I have experienced is a man shouting in my face “Oh my god she’s an albino!” while I walked down the street and someone asking me on a dating app if my hair was this colour “everywhere”. Everyone’s experience is different, each as relevant and valued as the next.
A hidden disability
In a lot of ways, my experience of Albinism is that of a hidden disability. Most people think I just have really blonde hair and I’m from Scandinavia. Nowadays wearing glasses is extremely common so even that doesn’t indicate much.
However, I do find that it means I have to speak up for myself a lot – which I am not good at! Still to this day, I find it hard to say “I need some extra help”, to people I don’t know – like in a public place. I am too worried about being a burden, an inconvenience, an annoyance. I was brought up to believe that I just like everyone else, that I am just as good and just as worthy. However, on my quest to fit in, I am afraid to stick out and I do sometimes feel that saying I need help, makes me stand out.
That said, one of the most liberating things that I have learnt only recently, is owning the fact that my eyesight is bad! It has taken a weight off my shoulders, allows me to own the narrative that surrounds it and has given me a huge amount of freedom.
I am acutely aware that these two ways of thinking are entirely opposite to each other, but they both exist in my head. In the same way we can be vulnerable and brave, scared and courageous, old in years and young at heart, happy and sad, we can have two entirely different ways of viewing ourselves and our experiences. I am human after all! I’m working through it and some days one thought pattern is stronger than others, so I just go with it.
So, that’s a bit more about me and my experience with Albinism. All in all, its been grand. Most days, I am proud of who I am and how I am built, but there are days when I just wish I could have 20/20 vision and drive a car. I have some more ramblings on my Instagram @lifeintheblurrylane so come an join me there for some more insights into my Life in the Blurry Lane.
For somewhat more random and day to day content, come join me on Instagram @lifeintheblurrylane
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