Auteur: Xueli Anne “Lian” Abbing, UNESCO Goodwill Ambassador
At The Open Eyes foundation, we celebrate International Albinism Awareness Day. We are all unique, but we all have skin, in different colours, some with more pigment and some with less pigment.
Basics of Albinism
We begin with the meaning of melanin, this word comes from the word Melas meaning black in old Greek. Melanin is an important pigment as it takes care of the protection of our skins. When our Melanocytes (melanin making cells) make less melanin, this causes our skin to be less protected against the sun, and it makes our skin whiter.
Albinism comes from the word Albus meaning white in Latin. In Mandarin Chinese, albinism is even better described: bái huà zhèng (白化症) meaning white making condition.
When our Melanocytes produce little to no melanin this makes our skins white. It is important to know that albinism does not change someone’s ethnicity, which means that someone who is Asian is still Asian also with albinism. This is not about language, but this is about respecting someone’s identity.
Not only people with Albinism
According to an article of the International Agency for Research on Cancer (IARC) of the World Health Organisation (WHO), skin cancer is a global problem. It is estimated that in 2022 there were more than 1,5 million new cases of skin cancer and that almost 60,000 people died from this type of cancer.
In people with Albinism this number is even higher, a high percentage of persons with albinism are estimated to not to live beyond 40 years old as they cannot protect themselves from the UV (ultraviolet) rays of the sun. It is important to note that many people with Albinism live beyond the age of 40 because they protect themselves against the sun and have access to Health care.
Better safe than burned
Generally speaking, if cancer is diagnosed early this increases the survival rate but of course it is better to prevent skin cancer all together. Persons with Albinism need to wear protective clothing and put on sun cream on with a high sun protection factor. They also need to check their skin regularly and need to contact the General practitioner or see a dermatologist to ask for routine checks.
We can see the brightness of the sun, but we cannot see the brightness of the UV because it is out of our spectrum of light we can identify. So even when it is rainy outside and we think we do not have to put on sunscreen it can still harm our skins.
It is a myth that only people with a little melanin can get skin cancer, it is more common but it is important to know that also persons with darker skin tones can get skin cancer and that this is not a problem which is confined to one group of people.
On the bright side
Skin cancer is in most cases preventable with less sunbathing and good protection and if seen early very treatable. Sun cream is now on the WHO list of essential medicines thanks to the hard work of many lobbying organisations. This means that national governments must make sunscreen available for everyone.
It should not matter what kind of skin colour you have the colour of your skin is not to divide, it contributes to the painting of the world.
You cannot see albinism
We talked about people with a white skin who have albinism but this is just one type of albinism, albinism is found on many genes and can be recessive (both biological mother and father need to carry the albinism gene) or X-linked (more common in biological man because they only have one X- chromosome, so one mistake in one chromosome means they get albinism). Some albinism types are only in the eyes (Ocular Albinism (OA)) and some types are in the eyes and skin (oculocutaneous Albinism (OCA)). This can also be dived into subtypes, so someone with OCA type 1 albinism can have a totally different skin compared to someone with type 2 OCA albinism and to make things more complicated there are also syndromes like the Hermansky-Pudlak syndrome which bring additional challenges.
Let’s celebrate
Albinism makes us unique but speaking for most people with albinism we just want to belong. We want to answer question about our condition and work together so that we can strengthen each other, we do not want to be downgraded to only our condition, we want to celebrate our albinism, sharing our struggles and be together on this day. So, on behalf of the Open Eyes foundation I wish you all a happy international albinism awareness day.
References:
- Mayo Clinic (n.d.) ‘Albinism’
- International Agency for Research on Cancer (n.d.) ‘Skin cancer’
- United Nations High Commissioner for Refugees (2025) ‘Skin cancer poses global health emergency for people with albinism, UN expert warns’
- Mayo Clinic (n.d.) ‘Basal cell carcinoma’
- Balch, B. (2022) ‘Why are so many Black patients dying of skin cancer?’
