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12th February 2019

Living with Vitiligo

An interview with Emma Rush, discussing life with the skin condition, Vitiligo.

Vitiligo: a condition which causes pale patches to appear on the skin due to the loss of natural pigment. This can vary from small, singular patches to complete loss of skin colour.[1] Vitiligo UK founder Emma Rush recently spoke to us about her condition, whereby she explains how it affects her life and gives advice on how she manages it. Read her interview here:

1) When were you diagnosed with vitiligo?

I had a very small patch on my back 17 years ago which I didn’t pay attention to. Then, just after my second child was born, we went through a very stressful time as a family and I started to notice more white patches develop on my skin, including my face. That’s when I went to my GP to get the condition confirmed. I already knew what it was as my father had vitiligo.

2) How does vitiligo affect your daily life?

I’m definitely conscious of it on a daily basis but, like most people with vitiligo, I have both good and bad days. If I’m meeting new people or going out I will wear make-up as it gives me more confidence. If you can manage how you react to people who could be looking at your condition then you become much more powerful and free! Part of that is having a support network (such as our Facebook group) of people who understand what the low moments with vitiligo are like and can support you.

On the positive side, I’ve been really fortunate that I’ve got opportunities through my skin disease to do voluntary work and to meet amazing people with vitiligo, and so in that sense, it’s absolutely changed my life for the better.

3) Here at SunSense, we encourage people to protect their skin from the sun’s harmful UV rays on a daily basis and understand this is especially important for those with Vitiligo. Do you use sunscreen on a daily basis and if so, does it bother you?

I have a facial sunscreen for the winter months, which I try to use before I put make-up on, so it’s not a problem to apply it on my face all-year-round. It can be a pain because there usually isn’t enough SPF protection in your usual, every-day moisturiser to protect you, so finding a good sunscreen product is key.

4) Do you get sunscreen on prescription due to your skin condition (if so, what brand/product)?

Sunsense is one of the products that is offered on prescription and in the past I’ve had the very good value Sunsense Ultra SPF50+ 500ml pump.

5) Do you buy any sunscreen products (if so, what brand/product)?

I have bought and used a number of different products and all are SPF30 or above.  I have the 500ml Sunsense Ultra product on hand to apply before going out for walks or to swim. 

6) What other measures do you take to protect your skin from the sun’s harmful UV rays – does this differ in the UK than abroad and if so how?

In the UK, I would tend not to sit out in the sun, so, for example, if we go out to eat, I’ll choose to sit under a parasol, wear sunglasses to protect my eyes, and will have applied sunscreen to protect against reflected sunshine. I also tend to wear loose, long-sleeved clothes as that’s an easy way to help protect the skin on your arms. I’ve not ever bought specific sun-protective clothing, though I know a very good range is now available to buy.

I’m very careful about the back of my neck because it’s hard for me to apply sunscreen there, and sometimes the neckline of tops can be lower than you think and you can get burnt there. When abroad, I always stay in the shade and avoid being out in the sun.

7) Do you find your skin is easily affected by the sun if you don’t wear sunscreen?

Like most people with vitiligo, if I am not careful with my skin it burns very quickly and severely.  I am conscious of the sun all the time in the summer (unless inside!).

8) Do you find your vitiligo is harder to manage in summer or winter?

My vitiligo is definitely harder to manage in the summer. It’s a daily campaign against being burned! In the winter, you still need to be vigilant but you can wear long sleeves and trousers so less of your affected skin is on show. I think a lot of people with vitiligo like the break that winter gives them.

9) Has having vitiligo increased your awareness of the dangers of sun damage?

Yes, having vitiligo has increased my awareness of sun damage. A suntan is actually a sign that your skin has been damaged. People associate a tan with health and beauty but in the long term, it is degrading your skin more rapidly than it would if you protected your skin with a high SPF.  Beyond the aesthetic concerns, skin cancers are the fastest increasing cancer in the UK, with melanoma being the 5th most common cancer in the UK.[2]

10) Has your Vitiligo changed since you were diagnosed? If so, in what way?

Like for many people, my vitiligo is very erratic, which is one of the things that is hard about managing the disease.  This means that I can go through periods when my patches are quite stable, and not increasing, and then I will have other times when it literally changes every day.  This can be stressful in itself.  One of the tips I was given by a consultant dermatologist last year was to see how your vitiligo has changed by taking a photograph on a set date each year, or every six months. It can help you see if it’s been stable for a while, and is also invaluable if you’d like to get treatment for your vitiligo. You can not only show your GP how quickly it’s progressing and the stress that’s causing you, but also can show your consultant dermatologist your starting point for treatment.

I know that my vitiligo is now a part of me, it’s not going to spontaneously disappear as that happens very, very rarely, so I need to live with it. I can accept that it will give me opportunities, like running the charity Vitiligo Support UK and offering other people information and support, and also that it will make my life a bit more complicated, and sometimes upsetting, than someone with ‘normal’ skin. I hope that my experiences and those of the other people who share their experiences in the charity’s Facebook community will help others to live with their vitiligo and to enjoy and live their lives to the full.

For further information on vitiligo, follow Vitiligo Support UK on Facebook and follow our social channels @SunSenseUK.  

[1] British Skin Foundation, Vitiligo (Internet) 2019 (cited 2019 Jan 10) Available from: https://www.britishskinfoundation.org.uk/vitiligo

[2] Cancer Research UK, Melanoma skin cancer statistics (Internet) 2019 (cited 2019 January 10) Available from: https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/melanoma-skin-cancer

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