A USER’S GUIDE TO VITILIGO, BY EMMA RUSH AT VITILIGO SUPPORT UK

This month, we’re focusing on vitiligo, a condition in which the pigment of the skin is destroyed, causing pale white patches to develop on the skin.

Here Emma Rush, who is the founder of Vitiligo Support UK and has vitiligo herself, shares her top tips for living with the condition that affects about 1% of the world’s population.[1]

THE VITILIGO “A, B, C”

I set up Vitiligo Support UK as a charity in 2016, because I wanted to share some of the important information about it that can help people get treatment, and the right products to protect their vitiligo.

I also wanted to reach out to people with vitiligo to empower them to enjoy their lives and respect their beautiful skin.

We are on social media, have a website packed with information, and we run monthly MeetUps so people can get together and ask questions face to face about their vitiligo.

Three Top Tips about Vitiligo: Vitiligo is ‘treatable’ but not ‘curable’

At Vitiligo Support UK we often get asked whether there is a cure yet for vitiligo. At the moment, the answer is no. Until there is a cure we see the key to managing your vitiligo as being three-fold:

A.     Seek treatment, early on if possible, and if this is what you want to do.  If you decide to, research has shown that UVB treatment (available in hospital phototherapy units by referral from a consultant dermatologist) works well in the early stages.[2]

B.        Find resources to give you information and support

There is plenty of advice and support available from qualified professionals and sources of information which we would recommend in the first instance. We also have a closed Facebook group you are very welcome to join!

https://www.facebook.com/groups/VitiligoSupportUK/

There’s also lots of information on our website, including our factsheets and our newsletters.

C.        Get help if it becomes overwhelming.

Many of us, especially with very visible patches on our faces, hands and feet, can find people’s ‘interest’ in our condition overwhelming at times.

If you need some support, get it early on.  Talking to someone about your feelings about your changed appearance can be helpful, and allow you to own your vitiligo, and not get to the point where it owns you.

Our three top questions from people with vitiligo:

Here are three things people don’t tend to know about their vitiligo!

  1.     What sunscreen should I use?

Sunscreen is vital because your tender vitiligo patches have no melanocytes or pigment to protect them from the sun.  You need to use at least SPF30S and preferably SPF50+ on your skin, and to stay safe in the sun by avoiding direct sunlight, using clothes and a hat to protect you and to avoid sitting out in the sun between 11 and 3 o’clock.

In the UK sunscreen is available on prescription for vitiligo.  One of the most commonly prescribed sunscreens i[3]s SunSense Ultra, which offers SPF 50+ and is available in three sizes, including a handy 50ml roll on, a 125ml bottle and a 500ml pump.

On our website and Facebook group there’s a letter you can print out and take with you to your GP that explains why sunscreen remains a prescribable item for people with vitiligo.

Make sure that you have your sunscreen with you at home, at work and in the car, ready for unexpected exposure to the sun (they do happen, even in the UK). The SunSense range is tested to ensure that it has a long shelf life’ or similar. Sunscreen usually loses its effectiveness a year after you open it, so keep an eye on when you opened it, however the Sunsense brand is effective beyond one year and its Ultra formulation is effective for up to four years.

1. Is there a link between my vitiligo and other auto-immune diseases?

Research shows that there is a strong link between vitiligo and lupus, and vitiligo and thyroid disease.[4]  Vitiligo Support UK ran a poll on the Facebook group on this topic, and found that many people reported that they had other auto-immune conditions, as well as their vitiligo. Check out our ‘Vitiligo and Thyroid Disease’ factsheet, available on our website and make sure you’re aware of the symptoms.

2. How do I manage other people’s reactions to it?

Sometimes vitiligo can suck.  You’re happily minding your own business, feeling good in your skin and someone’s rude comment or obvious reaction when noticing it can get you down.

When I was first diagnosed with vitiligo, in 2004, there wasn’t anybody in the public eye who stood out and owned their beautiful skin.

Now social media, although it also has a lot of things wrong with it, has been a great platform for many people with different skin conditions to come forward and has produced lots of people with different skin conditions, showing off their lovely-gorgeous skin. This can help you own your skin and flaunt your fabulous patches.  Check out the hashtags #vit, #vitiligo, and #lovetheskinyourein and our Instagram feed on @vitiligosupportuk.

You can also use camouflage products to cover your vitiligo up completely.  In the UK, camouflage is available via the amazing charity Changing Faces, and you can either self-refer for appointments with them, or may have to go through your GP.

Other people find ordinary make-up, bronzers or fake tan products useful to give them that little extra confidence to go out and enjoy their lives without some of the impact of staring and comments.  On our Facebook group, now that the summer is coming, people are exchanging details of fake tans that have worked well for them, which can cut out some of the trial and error in getting the right one for you.  Come and check it out!

Whatever you do, whether you seek treatment or not, feel you’ve accepted it or still struggle from time to time, show off your patches or take the camouflage route, you are very welcome in our vitiligo community.  We’re here to offer you information to make your own choices about your skin, and support to help you live comfortably in it.

Vitiligo Support UK is registered in England & Wales under charity number 1170557

Twitter: @VitiligoUK

Instagram: @vitiligosupportuk

W:www.vitiligosupport.org.uk

 

 

 

 

 

 

[1]British Skin Foundation. The condition that affects about 1% of the world’s population. [Internet]. Available from:

 http://www.britishskinfoundation.org.uk/SkinInformation/AtoZofSkindisease/Vitiligo.aspx

[2]Dermatol Clin 35 (2017) 171–192  Available from: http://dx.doi.org/10.1016/j.det.2016.11.008

 

[3] https://bnf.nice.org.uk/treatment-summary/sunscreen.html

 

[4] W.J Cunliffe, R. Hall, D.J. Newell and C.J. Stevenson. “Vitiligo, Thyroid Disease and Autoimmunity”, British Journal of Dermatology, Volume 80, Issue 3, March 1968  
Pages 135–139