Many people don’t understand that albinism is not just a single condition. There are many forms of albinism – the term itself is actually a broad description of several inherited conditions, all characterised by a lack of pigmentation (melanin) and accompanying vision impairment.
In fact, general hair and skin colour is irrelevant when it comes to making a formal albinism diagnosis. A diagnosis is made by an eye specialist (ophthalmologist) who looks for an absence of melanin in the retina at the back of the eye. Hair and eye colour can point to the particular sub-type of albinism but they are not in themselves a factor in making a formal diagnosis.
Forms of Albinism
There are three main forms of albinism, the two main ones being Oculocutaneous albinism (OCA) and Ocular albinism (OA). A third condition, Hermansky-Pudlak Syndrome (HPS) is also characterised by a lack of melanin and can cause bleeding problems, bruising, and in some cases, lung and bowel disease.
Oculocutaneous (pronounced ock-you-low-kew-TAIN-ee-us) albinism (OCA) involves the eyes, hair and skin and can be broken down into 4 main groups:
- OCA1 where melanin is not produced by the body at all, leading to very pale hair and skin and more severe vision impairment. OCA1 can be further divided into two subtypes.
- OCA1A, where no melanin is produced, leading to white hair and very light skin.
- OCA1B, where a small amount of melanin is produced, leading to hair that may darken to blond, yellow/orange or even light brown, as well as slightly more pigment in the skin.
- OCA2 where there is the capacity to make a minimal amount of melanin pigment leading to hair color ranging from very light blond to brown.
- OCA3 which is very rare and results from a separate genetic defect that leads to more substantial pigment in affected individuals.
- OCA4 which results from yet another genetic defect leading to affected individuals making a minimal amount of melanin pigment similar to persons with OCA2.
Without genetic testing it is impossible to really tell the difference between these OCA sub-types but it is not necessary to understand the exact sub-type in order to access help. Sun protection is required across all sub-types and vision impairment will also be present at differing levels so it is not a necessity to understand the exact sub-type present.
Ocular albinism (OA), is much less common and involves primarily the eyes. In OA the skin and hair are not affected (in fact their skin and hair may appear similar or slightly lighter than that of other family members) but they have the nystagmus, photophobia, depth perception issues and vision impairment that characterises those with OCA.
The many forms of albinism affects every race. Seeing one person with albinism doesn’t mean you have seen all forms of the condition. The only common factor is the reduction or total absence of melanin in the body.
People with albinism are otherwise just like everyone else. There is no deficiency in understanding or intelligence or talent. Only an inherited deficiency in pigmentation.
So why are people with albinism subject to prejudice and discrimination and bullying and sometimes even hatred and violence?
Do people feel threatened by those that look even a little different to themselves? Or are they intolerant generally of people who have any sort of disability?
I would really like to understand – it is absolutely unfathomable to me that people with albinism can still be treated with any sort of disrespect in this day and age. I really don’t understand it at all.
The variations of albinism are many and varied as you can see from some of the photos below, but these are real, vibrant people who deserve respect, support and understanding.
I hope these images, illustrating the many forms of albinism, will go a small way to increasing acceptance and understanding, even if only one person comes away with an enlightened view. You can also find out more about albinism by following the links below:
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)
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Interesting article – thank you! I had heard of albinism but know very little about it, and I agree with you, I can’t understand why anyone would think it is ok to be disrespectful to someone based solely on their physical appearance, no matter what their skin colour is.
So many different looks! I’ll confess I thought it was all about being really pale, with the white blond hair and almost translucent skin. There is a huge variation in those pics; I wouldn’t have thought some of them had albinism at all! Thanks again for sharing Kirsty xx
I will never understand prejudice based on someone looking a little different either. Really informative, thanks.
Or a LOT different, for that matter!
Our youngest son has a friend who has the condition, and to be honest we never ever noticed it until the Mother started to talk about the different ooloured skin on her son’s arms/legs.
We just accepted the sweet boy as Kyle’s Friend.
Crazy how many people judge another person by its looks, when really its inside that counts.
It’s such a fascinating subject, I went to primary school AND boarding school with two girls with some form of Albinism and so it doesn’t really phase me, but kids can be so cruel, I have a friend at school and she told me her red heads sons still get teased, I wish parents would teach their children tolerance xx
I meant to add – and acceptance x