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Vitiligo Diaries p1 – what is vitiligo?

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Vitiligo Diaries p1 – what is vitiligo?

Usually we use the word “skin colour” in the singular, even though all of us have more than one shade of skin colour, be that a freckles, a mole perhaps, or maybe a white spot. The latter would be the case for someone with vitiligo, or white-patch-disease. It is an auto-immune disease that affects the cells that produce melanin in your skin, which defines your skin colour. It is not contagious and affects “merely” someone’s appearance.

Vitiligo has received more visibility on various social media platforms over the past years. Why do I know that so well? Because I was diagnosed with vitiligo almost 20 years ago, at a time where I didn’t know anyone famous that had the same condition as me or saw people like that in magazines or fashion campaigns. It was a different world in that sense, and I am beyond happy that we left it behind us. In this three-part series I am guiding you through three aspects of this story (part 1: the pathology, part 2: my treatment history, and part 3: living with vitiligo).

We have already established that vitiligo is an auto-immune disease, so my body thinks that something is malicious, that is however part of my body. For the case of vitiligo, the body is attacking its own skin pigment cells and leads to those parts being left without pigment, completely white. It usually is present non-segmental, meaning that it affects both sides of the body and usually spreads with time – but can also stay the same or even decrease. It really has a mind of its own and is usually symmetric in a way.

But how does it start? Like all other auto-immune diseases, there can be a trigger of sorts, whether that is emotional or physical, because vitiligo is also linked with other factors, such as thyroid malfunctions. In my case, it was probably a mix of emotional trauma and hypothyroidism. Genetics might also play a factor in this, my brother for example has been recently diagnosed with vitiligo (at age 37 – I was about 10).

The patches of white skin usually start around joints and “openings” and might be linked to occur in places with more friction. The hairs in a patch usually turn white (I frequently plug white eyebrow hair) and the edges of a patch or “sharp”, so you could usually mark it – in a way it does resemble a map. As you can tell by my phrasing, there is a lot of unknown here, because the occurrence of a lot of auto-immune-diseases are quite unique.

So it’s just a bit of white skin? Well, yes and no. When patches of your skin don’t have melanin, they can only do one thing: burn. They cannot tan, like other parts of the skin. Therefore sun exposure is risky for people with vitiligo and they might end up with painful burns, even when they were barely exposed to a lot of sun. This might lead to a higher risk of getting skin cancer, which is maybe a less risky type of cancer, but, at the end of the day, it is still a type of cancer. And last but not least there is the mental aspects of it, that it might be hard for someone to deal with their skin suddenly changing, and also in a way where you have little to no control over it.

Is there a cure? There are ways to treat vitiligo, but they usually end in minor changes, and mostly there is no cure. Common ways of therapy is phototherapy (being exposed to a specific UV-B light – which again results in the higher risk for skin cancer) and steroid creams, often used together. Therapy might be most effective when someone is having an acute attack (the patches are increasing).

The best option, in my opinion, to live with vitiligo is acceptance. Acceptance that you don’t know how it is going to alter you appearance over the years, acceptance that you need to protect your skin from sun light and acceptance that people are going to stare at your spots. Which is all easier said than done, but more on that in part 2 and 3.

Disclaimer: I am not a doctor, but I have done thorough research.

 

 

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