Living With Vitiligo
A diagnosis of vitiligo can seem like a life sentence as the unpredictable course of the disease means no-one can be sure how it willprogress and until a cure is found people with vitiligo must learn to live with it. There are, of course, treatments that can improve the condition, and sometimes this improvement can last for many years. But there is always the fear that the white patches may return and spread more widely than before.
Most people after they have been diagnosed experience a range of feelings and emotions including shock, denial, anger, fear, guilt, anxiety, isolation, depression and finally acceptance. A lot of people never get to the last stage and many can become overwhelmed by low self esteem and lack of confidence. Some people with vitiligo never really fulfil their potential and many children are teased and bullied with some reported cases of underachievement at school.
However, vitiligo need not prevent you from doing what you want in life, once you realise it does not have to take over your life and is only part of who you are. Focusing on your good points and building up your self esteem will help to put vitiligo in perspective. Self confidence, once achieved, should make it easier for you to deal with intrusive staring and rude remarks and go out in public without feeling ashamed or ugly. Not many people can boost their confidence without help. Although support from friends and family is essential you may find a course of counselling helpful.
It is not surprising that people stare at the sight of vitiligo because it looks strange and they do not know what it is. They may recoil because they are afraid of catching it. Explaining what it is can help to dispel their fears but you are not obliged to talk about it. You are entitled to choose how much or how little you discuss it, especially with strangers. Be prepared with a few simple explanatory phrases. “It is vitiligo, a condition that affects the pigment cells in my skin. They are not functioning properly or are missing from my skin and that causes these white patches which can burn easily in the sun if I do not protect my skin . It is not life-threatening and it is not catching”. Humour is another way of dealing with rude or insensitive remarks. Try to have a few funny remarks up your sleeve to use when the occasion arises.
Having vitiligo is not a tragedy although the loss of your skin colour can also appear to threaten your racial identity if you have dark brown or black skin. The colour of your skin is not the only thing that makes you who you are. Family background and upbringing, personality, education, cultural and religious beliefs, the country you live in, are more important in defining you as a person. You could say that having vitiligo is one way to show the stupidity of judging anyone by the colour of their skin.
Paul Johnson, 37, has had vitiligo for almost 25 years. He tells his story.
"I started noticing the white patches in my early teens. They progessed relatively slowly to my elbows, knees, hands and feet by the age of 18.
"After that, they spread rather rapidly. By 21, I had plenty of smaller patches across my face, trunk and legs. By 30, I had lost the tanned colour across about 80% of my body, which is quite interesting when you have a Maltese ancestry. That’s the way things stayed for years, until recently.
"In summer last year, I noticed a small amount of randomly scattered repigmentation on my arms. Nothing to get excited about really, as I often got small patches of colour during the peak summer months. But by November, when the sun and heat of summer had gone, the little repigmented spots were still there.
"I was intrigued and happy about this new development. Like many people, I have managed to live with vitiligo for years now. But I can’t deny that it remains in the back of my mind almost continuously. It has affected my confidence. Physically, I haven't been totally at ease with myself.
"I thought that if I could have some additional treatment it may help the body to repigment.
"I heard about many treatments, but the one that caught my eye was narrowband UVB. The Vitiligo Society has a list of all the UK hospitals that offer this treatment. The nearest was two miles from home. I saw my GP and requested a referral to a consultant dermatologist.
"The consultant was positive. After a discussion and examination, she put me forward for a three-month trial.
"As I drove to the hospital for the first appointment, I was worried about what the treatment was like. But my experience has been no problem.
"Typically, each visit takes about 20 minutes from arriving at the hospital to leaving. The machine is a large rectangular ‘box’ where you stand for treatment. Each of the walls and door are covered in light tubes that switch on for the time period set by the hospital staff.
"I was started on a very low dose of around 20 seconds, two or three times a week. This was increased slowly as the treatment progressed, making sure that I did not burn in between treatments. Generally, I go slightly pink, which is about the right amount of light exposure to get the skin working.
"It took six weeks before I achieved any repigmentation. It happened first on my face, which I believe is the most susceptible part of the body. Small dots of brown appeared on my forehead. Slowly other parts of the body showed similar signs of repigmentation.
"After a follow-up visit to the consultant in April, it was agreed that I should continue with the treatment as it was having an impact.
"In May, all areas of my trunk and legs showed repigmentation from almost all the hair follicles. It looks like somebody has covered my white patches with dots of brown felt pen.
"My hands and feet have not really shown much repigmentation yet. They are the hardest part of the body to repigment. The dots of brown on my face are starting to join up, and my face has gone from 80% white to 90% brown.
"I knew the treatment was working when the window cleaner asked me if I had a nice holiday. I can’t tell you how uplifting it is when people comment on how brown I look.
"Although no results can be guaranteed, my own experience with narrowband UVB has been incredible so far."