World Vitiligo Day 2017

I know my usual blog posts are about dyspraxia, but I also have a skin condition called vitiligo which I wanted to blog about. I’ve actually been meaning to write this particular blog post for a couple of years now, but each year I’ve never got round to writing the blog post in time (except this year of course – only just, though!)

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So, vitiligo. What is it? Well, it is an autoimmune disorder (autoimmune disorders are where your immune system decides your healthy cells are foreign, therefore attacking these cells). In the case of vitiligo, the cells being attacked are the melanocyte skin cells that make melanin. Melanin is what gives your skin its colour, meaning that parts of your skin lose their pigment.

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For the less scientific explanation, it essentially means that you have white patches on your skin.

These white patches don’t hurt or itch, they’re just ‘there’. However, due to lacking melanin they don’t have any protection from the sun. This means having to be especially careful of the sun and ensuring that factor 50 suncream is worn! Whilst writing this blog I’ve found out through google that another name for vitiligo is ‘leucoderma’ – leuco meaning white and derma meaning skin; I never knew that!

I’d never heard of vitiligo myself until a few years ago. And here’s how I first heard about it…

It started almost 4 years ago in August 2013, when I began to notice very faint, small white patches on my hands. I did wonder what they were, but I wasn’t too bothered by it as I already had eczema on my hands and thought it might be related to that. I also had tiny little scars on my hand from when I had injections as a baby so I thought it could have been something to do with that.

Over the next few months, however, the white patches on my hands began to spread and started to become a bit more obvious. They were still quite faint, but were definitely becoming more noticeable. It wasn’t until March the following year when I decided to google it. Straight away, vitiligo came up (which I then thought was pronounced ‘vi-til-ih-go’ and later found out it’s ‘vi-til-eye-go’). I saw things saying that there is no cure and the patches can spread over time. Half of me was thinking “I hope it is just something else” but at the same time the pictures and description were exactly like my skin.

It sounds really weird, you’d think white patches on your hands wouldn’t be something you’d forget about, but I actually kept forgetting to make a doctor’s appointment about it. It was in April when I went to the doctor’s about it, essentially saying “I’ve got these white patches, are they vitiligo?” (by then I also had a white patch under my armpit and one developing around my mouth). The doctor said it may have been a fungal infection, as sometimes they look similar – so she asked another GP for a second opinion as he was a dermatologist. I remember him saying “I think it is vitiligo I’m afraid” (although I was already 99% sure it was that anyway, so it wasn’t really a surprise). I thought it was a little weird the way he said it, it sounded like the sort of thing they’d say about a serious illness. But I guess it’s just because there wasn’t anything they could do about it.

Due to vitiligo being an autoimmune disorder, it is often associated with other autoimmune disorders – so I had to have a blood test done just to rule out anything else (it all came back clear). The doctor I saw also asked if I wanted to be referred to a skin camouflage service who do specialist make-up. From what she was saying, I thought it would be really hard to get but I thought it would be worth a try anyway. I was also referred for another appointment to see a dermatologist, where they could ‘confirm’ it was vitiligo.

The appointment was in June, but during this time the white patches didn’t really change very much. I did get a couple of faint white patches on my stomach though, but even now they are still very small and very faint – I can actually barely see them! On the other hand, as the rest of my ‘normal’ skin tanned it meant that the vitiligo became more obvious as there was more of a contrast. I wasn’t majorly bothered about it at this point though, I remember me and a friend once making out the different ‘shapes’ we could see on my hands!

So I went along to the dermatology appointment. It was a bit strange the way they did it as it was actually with the second doctor who had come in during my first appointment. I didn’t really see what there was to say that was any different to what he said before, but I guessed they just had to do it to officially confirm it.

During this appointment the doctor confirmed that it was vitiligo (which I already knew) and explained that there wasn’t really anything they could do about it. He did prescribe me with some steroid creams, which he said there was a possibility they may have worked but he couldn’t guarantee it. I remember him being very clear that one was for my hands and one was for my face – I don’t like to think what would have happened if I’d have got them the wrong way around! The doctor also pointed out how important it was for me to wear Factor 50 suncream (I’m sure the first doctor pointed it out too – but I can’t remember!) He also said that if I didn’t use suncream it could make the white patches worse. It has also been recommended that I take vitamin D tablets, due to the fact that using the amount of suncream that I do means getting less vitamin D from the sun.

I tried the steroid cream over the next few months, but it didn’t make any difference. As it was now summer and the rest of my skin was tanned it meant that the white patches were quite obvious. And the amount of questions I got asked that summer! In some ways I can understand, if you suddenly notice someone you know has got white patches on their hands (this was where it was most obvious) you’re probably going to wonder what it is… On the other hand, it got so frustrating having to explain over and over again. I’d get asked “What happened to your hands?” and I even had a few people say they thought it was some sort of acid burn! In addition to this, I think the fact that people were asking questions about it made me realise it was obvious. And the more questions people asked, the more self-conscious I got about it…

When it came to going back to school in September, going into year 13, I was so worried I would get lots of people asking about my hands. I think this was probably the most self-conscious I’ve felt about it. Due to the fact that I use a laptop in lessons, I thought this would make it even more obvious – when I was typing. There were a couple of times where, as I was wearing a cardigan, I actually pulled my sleeves further down to cover my hands as I felt so self-conscious about it. I did have a few times where I was pretty sure a couple of teachers were staring at my hands, but then this could have just been me worrying. Despite what I thought, I didn’t actually get asked any questions about it at school at all!

It was during the September when I had a letter about my skin camouflage appointment, which was a few weeks later. A few weeks prior to this I received some information packs from the charity ‘Changing faces’ – the skin camouflage service comes under this. I was quite confused when receiving them, as they seemed to be aimed at people with more severe ‘disfigurements’. One of them was titled ‘Communicating with confidence’ whilst the other was titled ‘Living with confidence’. I kept them anyway just in case there was anything useful in there!

I also received a letter about another dermatology appointment, which was a few days before the skin camouflage appointment. I remember I really didn’t see the point to the dermatology appointment – I would just be going there to say the cream hadn’t worked. It was essentially just that really, along with showing the doctor the bits where my patches had spread. They were very surprised how long the skin camouflage appointment had taken though! I’m not sure if it was this appointment or the appointment before, but me and my Dad mentioned that we’d quite a few things online about treatments. We were told that there wasn’t really any effective treatment for vitiligo, but they did tell me I could come back if the patches got worse – particularly on my face. That kind of confused me, because they’d just told me that there wasn’t really anything that could be done about it…

A few days later I had my skin camouflage appointment. Which was conveniently close to the Waffle House in St. Albans – perfect timing for lunch after the appointment!

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I remember me and my Dad were quite confused at which way to go for my appointment and the woman in reception was just so rude! Thankfully though, the woman I saw for my appointment was lovely! We mentioned at the beginning about my dyspraxia, just to make it clear that applying make-up could be quite tricky for me! She told me about the different types – there was a base coat, a main coat and the finishing powder. What really surprised me was how long it took to apply – to apply it to just one hand it took around half an hour! It was amazing the difference it made though. The colour was slightly too orangey for my skin so she ordered a slightly different shade but this was the difference it made.

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It wasn’t until looking back on this photo that I realised how much my vitiligo has spread (on my left hand at least!) I no longer have the little ‘bubbles’…

When it came to my face, I tried applying the make-up but struggled with getting the pressure right, not putting too much on etc. It doesn’t help that I don’t wear make-up anyway so I’m not used to applying it at all. She also mentioned that the person who had an appointment before me was undergoing treatment (I think it was phototherapy), which seemed strange considering what I’d been told about there not being any effective treatment. She also mentioned suncream and said that I would need to wear it on days even when it wasn’t that sunny. I hadn’t realised this, I thought it was just on really sunny days that I had to be extra careful. In addition, she said that it would be possible to get suncream on prescription which I also wasn’t aware of. I later had a doctor’s appointment where I got the skin camoflauge cream and suncream on prescription (bearing in mind I go through a lot more suncream than others would!) The skin camoflauge appointment lasted about an hour altogether – I was really surprised it lasted this long, even more so with the fact that it’s done by volunteers!

For this reason, I feel so bad about the fact that the appointment was nearly 3 years ago and I still haven’t used the skin camouflage make-up. Firstly, this was due to the amount of time it takes to apply. Secondly, it’s due to the fact that I’m not as bothered by it really. There are times where I do feel a bit self-conscious about it, but not really to the extent where I’d want to start wearing skin camoflauge make-up. I don’t get asked nearly as many questions now about my skin in comparison to that first summer – in fact I can’t remember the last time when someone asked me about it! I have had a few times though where, for example, I’ve been in London sat on the tube and out of the corner of my eye have seen someone staring at my hands – which isn’t exactly nice! It is much more noticeable in the summer when the rest of my skin tans, whereas in the winter it’s sometimes not very noticeable at all. There’s quite often days where I kind of forget I have it!

Another reason I tend to be more aware of it in the summer though is due to having to wear lots of suncream. I once saw an advert for a suncream which you only have to apply once a day, but then I read the reviews where it said it stains very easily. That made me think “Maybe not the ideal suncream for a dyspraxic!” I’ll stick to the standard suncream for now (yes ‘stick’, literally!) The most annoying thing about suncream, though, is that I have a patch of vitiligo right near my eye, which means having to put suncream on right near my eye. Nine times out of ten I’ll end up getting suncream in my eye a few minutes later which isn’t fun!

You may have read this blog post wondering if this is the condition that Michael Jackson had. The answer to that is yes, it is. He had a very severe form though. In fact, World Vitiligo Day falls on 25th June as a memorial to Michael Jackson – marking the date of his death. Another celebrity with vitiligo who has been in the media in recent years is Winnie Harlow, a model. I saw something online last year about people ‘copying’ her vitiligo with make-up, which I didn’t agree with. Here’s what I wrote on Twitter about that:

Going back to treatments as I mentioned earlier, I’ve seen all sorts online about various ‘natural home remedies’ but they’re not exactly the most reliable sources! What I have seen, though, is that there has been research into a new treatment that could be use to cure vitiligo. It’s very interesting!

For those wondering, vitiligo now mainly affects my hands but also partly my face. I have other smaller patches in various places on my body – my back, ankles, armpit, elbow. I’m not quite someone who sees vitiligo as a wonderful, unique thing, but at the same time I’m not too bothered by it. It’s just ‘there’ and I’ve got used to it really. I don’t mind bringing it up in conversation, but please don’t mention ‘how much worse it’s got’ or that it ‘looks like acid burn’ (not the most helpful comments!)

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Considering this blog post hasn’t been about dyspraxia, it’s been quite a long post. But as I mentioned it’s something I’ve been wanting to blog about for a while. Hopefully it will have helped raise a little awareness! As I did for my first ever blog post, I’m going to include a poll. Will be interesting to see the results!

 

Random fact: animals can have vitiligo too!

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Natalie 🙂

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1 Comment

  1. noorjahan

    Dear Natalie
    nice piece of work. I have vitiligo for nearly 30 years now, all over my face and body. I am curious to know about your camouflage at St. Albans. Could you share the address please?

    Like

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