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What living with skin disorder vitiligo is really like

What living with skin disorder vitiligo is really like

2014, Cosmopolitan

For most women in their twenties, skin woes stretch to niggly T-zones and perhaps the odd acne flare-up – maybe the odd sunburn mishap on holiday if we’re not careful. But for others, living with skin problems can be a reoccurring nightmare. June 25th is World Vitiligo Day – a day dedicated to raising awareness for the skin disorder – and last month we were contacted by reader Nadine Michaels. Nadine, 22, who wanted to tell us about her sister Sarah, 25, and her daily struggle with vitiligo. Here, Nadine shares Sarah’s story…

“The other day I asked my older sister Sarah, 25, to pose with me for a selfie. I love Facebook and Instagram and – like most girls in their twenties – I’m occasionally guilty of uploading the odd selfie. But to my horror, Sarah broke down in tears. My sister suffers from vitiligo all over her face and body, and wears makeup every day to cover it. Vitiligo causes pigments of the skin to turn white, resulting in patches all over the body. It’s fairly common skin condition and affects people everywhere, but nobody knows exactly why it occurs and currently there’s no cure. It’s not contagious and doesn’t cause any other known health problems, but the psychological and social impacts – as I’ve learned from my sister – are huge.

Sarah first started noticing patches at nine years old – small white patches on her knees. By 11 years old it was very visible – on her face, elbows, knees and feet mostly. There were white patches on her back too. Over the years, it’s continued to spread – now her hands (which used to be tanned) have developed large white patches too. Obviously, watching Sarah cope growing up with this skin condition has been hard. I can’t even begin to imagine how she’s felt and how difficult it’s been for her. School was hard – she felt self-conscious in PE lessons – she’d tell our mum she didn’t want to wear shorts or T-shirts. In the summer she’d wear long-sleeves sweatshirts and trousers so nobody could see. She’d cover her face in makeup – and still does. Her friends were understanding, but it was harder with boys – they made silly comments or joked about the way she looked.

Sarah now works as an administrator in an office job she loves and is brilliant at. But people can still be mean. She’s had upsetting incidents in public because of her vitiligo – people staring at her on the tube (at her hands in particular, which have now started to develop patches too). As a result, Sarah has struggled with relationships, worrying whether anyone will see her as beautiful. Because people aren’t aware of what vitiligo is (some people think it’s contagious or worry about touching it) it’s lowered Sarah’s self-esteem and confidence massively. She feels ugly and unattractive on nights out and often prefers to stay inside – she’s so afraid of people staring at her. Sarah’s single at the moment – it’s hard to have confidence around boys when you don’t feel confident in yourself. It’s especially hard for Sarah to cope with because I don’t suffer from it myself and neither do my parents. It seems unfair she is the only one to have it.

I felt horrible when Sarah said she didn’t feel beautiful enough to pose with me – I didn’t realise how little confidence she has. It broke my heart to hear her speak like that – as if she didn’t feel normal. Sarah has always been beautiful to me – both inside and out – and I felt desperately sad knowing she couldn’t see what I see. Because it’s classed as a ‘cosmetic’ condition, the NHS doesn’t provide any funding into research to find a cure for vitiligo and it’s difficult for people to understand how she feels – it’s not like she’s dying or ill, after all. The reason I’m telling Sarah’s story is because I want to raise awareness of vitiligo. If more people were aware of it, we could raise more funding towards research for a cure. By educating people, they’ll gain a better understanding of this condition and that way, when they see someone with it, they won’t be afraid or treat them differently. I was so pleased Winnie Harlow (one of the contestants on America’s Next Top Model, who also suffers from vitiligo) is becoming hugely successful – she’s doing an amazing job raising awareness of the condition. I’m so pleased she’s showing you can suffer from vitiligo, but still feel beautiful – I just hope other people start believing it too and finally start feeling happy in their own skin.”

So what exactly is vitiligo? We asked cosmetic plastic surgeon and skin specialist, Angelica Kavouni, to tell us the facts.

Q:What is vitiligo? Who is affected by it, and why?

A: Vitiligo is a skin disease where pigment cells (melanocytes) don’t function properly, or die. All skin types are susceptible to this condition – there doesn’t seem to be one skin type that is more susceptible than others. The main symptom of vitiligo is depigmentation, which is most prominently found on the face, hands and wrists. It tends to become more obvious on dark skin and patches often start small, before growing in size over time. New patches can also form too.The causes of both remain uncertain but we believe that the patchy loss of skin pigmentation is due to immune attacks on the melanocyte cells. It is thought that some sort of defective gene is most likely the cause. Vitiligo is sometimes also associated with autoimmune and inflammatory diseases, when ultimately the melanocyte cells become inflamed and die.

Q: Can anything be done? What can help?

A: Treatment expectations need to be handled carefully as the patient is unlikely to regain full pigmentation of affected areas. If you are a vitiligo sufferer then it's probably best to consult your GP who will then refer on to a dermatologist. Steroid cream can often be helpful – sometimes combined with ultraviolet light (UVB) therapy. 'Younger' lesions (less than three years old) stand a better chance of a speedy response and changes can be seen within a few months whereas older patches can be more resistant. Some patients report that their lesions improve with combination therapy of vitamin B12 and folic acid supplements with exposure UVB light. Personally, I have found the Obagi Medical Skincare range (including their chemical peels) offer a way to blend the patches making skin colour more uniform.

Q: Is there anything else that can be done? What do you recommend?

A:Sufferers can be stigmatised for this condition because it’s seen as ‘different’ and often need psychological support, so it’s important to be open with family and friends, who can help when you need it. Camouflage makeup is very useful and, with the wide range of mineral makeups on the market, coverage can often be easily achieved and maintained - for both men and women.Lighter skinned sufferers should avoid tanning the affected areas as darkening the surrounding areas will make the lesions more noticeable. There is always the option to depigment the whole unaffected skin to make the lesions less noticeable, but this is a dramatic option which brings with it huge life-long sun safety issues.

Original article: www.cosmopolitan.co.uk