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Living with Vitiligo - A personal experience by Maxine

Vitiligo has been my constant  companion for more than 50 years and is an integral part of who I am. Although at times it has almost overwhelmed me and there have been many troughs of despair, especially when I was younger, it has contributed in great measure to my achievements and my ability to empathise with people with skin disease and disfigurements.

The Beginning and Course
As is commonly the case, the course of my vitiligo has been erratic but with a general tendency to spread. Most people develop vitiligo before 20 years of age. The first white spots appeared on my knees and hands when I was around 12 years old. I was, at that time, living in Jamaica where I was born but I do not remember feeling bad about it. My parents and aunt were upset when it was diagnosed but I was much loved and never made to feel different in any way. I had a happy childhood in an extended family of grandparents, aunts, uncles and cousins. I did have some spontaneous repigmentation and for many years no new spots appeared.

Ethnic Concerns
Some of my experiences have been similar to those of others, whatever their ethnic backgrounds. As I am black most people imagine that I must suffer more than so-called white people. However, vitiligo is more noticeable on dark skin and the loss of colour can bring a fear of loss of identity. I found it difficult to envisage an all white body and prayed that an effective treatment would be found before this happened.

Progression and Psychological Implications
Adolescence can be a very difficult time to develop vitiligo. I was devastated when it spread to my face, particularly my lips, when I was 17 years old. I avoided kissing, and did not feel attractive, believing that no one would want to marry me. I was lucky; I was not teased or bullied at school which is quite common. Although there is no cure, psoralen used with sunlight or ultraviolet light (PUVAsol or PUVA) can improve the condition, at least for a time. One of my uncles was a GP and he managed to get topical psoralen from the US which I applied to the patches (except my lips). I wore a lint mask with the eye areas cut out and exposed my face to sunlight in the morning before going to school. The treatment did help and for a couple of years the improvement was maintained. But I became very self- conscious. This was a particularly cruel blow at a time when I was discovering my own sexuality and the talk among my friends was all about boyfriends.

Covering Up
One of the ways of coping with this disease is to disguise the white patches and many practitioners feel that this is the solution to the psychological distress felt by patients. Cosmetic camouflage creams can be prescribed in the UK and a voluntary service to show how to use them is provided by the Red Cross. I came to London in 1959 to further my education and was lucky to fine an enlightened GP who prescribed the creams and so I covered up and faced the world. However, it is only a temporary solution, as it is only too easy to hide behind the cosmetic camouflage make-up. It is not possible to cover up your entire body so if it does spread, as in my case, you have to face up to it.

Is Vitiligo Hereditary?
Many people with vitiligo find it difficult to form relationships and are concerned about the possibility of passing the disease on to their children. I was no exception. I met the man who became my husband during my post graduate teacher training course. It was very difficult for me to tell him about my vitiligo as I was convinced he would walk away To my amazement he asked me to marry him. We now have 2 children and two grandsons, none of whom have so far shown any signs vitiligo.

Everyday Life
During my pregnancies my vitiligo improved but after my second child the white patches began to spread more rapidly. My long, slim legs were affected, and my arms too. I was devastated. I stopped wearing short sleeves and no longer wore shorts in the summer. Holidays became a nightmare and I no longer enjoyed going to the beach with the children. I loved the sea but felt unattractive, exposed and vulnerable in a swimsuit. For more than 20 years I did not have a single item of clothing with short sleeves in my wardrobe.

The Importance of Support Networks: The Vitiligo Society
By the time I was in my mid-40s I was beginning to get depressed as the condition worsened. I felt panic- stricken at the thought of turning completely white. I had by this time given up teaching and was working as an academic librarian in a university. One day a psychology PhD student who had become a friend told me about a programme on the TV which was to change my life. It was about a Sri Lankan woman with Vitiligo who was setting up a patient support group for people with the disease. I went to the first meeting at St Thomas' hospital where I saw nearly 150 people with Vitiligo. This had a huge impact. I joined the committee pf what was then called the Vitiligo Group and later became Chairman of the Medical Research Committee.
In 1993 I took early retirement and threw myself wholeheartedly into the Vitiligo Society, which had become a national charity with a growing membership. I was elected Chairman and then began a whole new life, learning new skills, becoming the face of vitiligo on the media, raising the profile of the disease among health professionals, giving talks in the UK and abroad. This was a period in which my confidence and self esteem were raised; helping others also helped me. An important part of my coping is knowing as much as possible about the disease. I also came to believe passionately in patient involvement in health care and research which led me to join the Cochrane Collaboration Skin Group (www.nottingham.ac.uk/csg /index,htm). The dearth of good trials for vitiligo was of great concern. With the aim of
highlighting this and stimulating research I instigated and became lead author of the Cochrane systematic review of interventions for vitiligo published in January 2006 (Whitton M et al 2006).