VITILIGO Friends

Dear Valerie,

My name is Robert, I have recently been using the social networking site ‘Facebook’ as a forum, I created a group on there which has in excess of 300 members who all join in discussion about vitiligo and their own personal experiences. Having vitiligo myself I know that being able to talk to someone else who understands and realising that I wasn’t alone was great help. It was through Facebook that I saw the note from your Son about vitfriends.com. I have looked at your site and can I say that you have done an amazing job getting everything set up.

If I can I would like to give you some background on myself. I first developed vitiligo at the age of 2; it was presented as a small triangle above my belly button. It remained as that for 5-6 years. It was then that I was really affected. I lost 70% of my pigment in a very short space of time. I was here that I learn something that a child shouldn’t really think ‘Life can be cruel’. I was lucky that my Medical Practitioner knew (only a small amount) some information on vitiligo and I was referred to a specialist.

From here I was given some Topical Steroids to use. These had no effect on my vitiligo, however they did cause my shins to bleed a lot during football (soccer). So on my next visit 4 months later I was taken off those creams and tried on another cream (a trial cream) which my mum gave permission for me to use. Once again no results. By now I was around the age of 8 or 9, I had been on holiday and was devastated by the way people including adults reacted to my skin (for the next 5 years on holiday I would wear long trousers and a long sleeve top, even on the hottest of days) My confidence had gone completely and I was heading downward in a destructive spiral. I began to stop communicating with people, I bottled everything up inside. I cried myself to sleep for a number of years.

I think the worst part for me was trying something I believed would make me better, and then seeing that nothing worked. The next recommendation for me was a treatment known as PUVA which I am sure that you are aware of. I went for the consultation and they then showed me the goggles that I would have to wear 24 hours after treatment. Straight away my answer was NO. I was only about ten at the time. I said to my mum, people look at me enough already why would I want another reason for them to do so. Once again another possibility taken away from me. My hopes were finally crushed.

The next major event that was coming up in life was my 11+ Exams to move on up to secondary school. Unfortunately the night before those exams I attempted to commit suicide. As you can probably guess my exams did not go that well. However from here onward was slowly the start of a change in my life. I went to a group called ‘Changing Faces’ where I received one on one sessions, creating my tool box on how to deal with people who don’t understand.  In theory it was great however in the real world things aren’t always as simple. I did gradually adapt these to my own personality and way of thinking. They did tell my mum about a group called the ‘British Red Cross’ who are a free service offering camouflage. This was something that I went to and initially liked. I saw a normal leg and torso when I looked in the mirror. I felt a brief moment of happiness. The next years holiday I wore the camouflage, for 2 days. I woke up the third morning and I said to my mum, I don’t want to do it. I said why should I have to cover up. It’s not me with the problem I am fine its them. To this day neither me or my mum know what changed in me that night. But as they say it was the start of the rest of my life. From that day on vitiligo and treatment were never mentioned in the same sentence.

Then when I was 15 my friend Harry invited me away to Florida with his dad. Of course I accepted. It was here that I finally decided I know what I’ve been told by doctors, about the risks involved with sun. I decided no they were wrong. Everyday I was in shorts and no top. I wore no sun cream. I admit my patches went a rose colour. But something happened. I repigmented to 40% in 2 weeks. Not to mention the confidence I had. That hole holiday, I would talk to pretty girls on the beach. Which taught me something else, vitiligo doesn’t make someone ugly unless they let it. I would chat away and if any asked about my vitiligo, I explained what it was and they were fine with it. That holiday changed my life, I got home and my mum was amazed to see the difference in pigment and in me. I was smiling and not just one day, but all the time. She was also amazed at the clothes I had bought. I bought a bright yellow pair of combat trousers (which I still own and to this day remain my favourite piece of clothing) and many other weird and colourful clothing.

I had finally fully embraced my vitiligo as a part of me, I actually thought to myself. I like the attention I get, people staring at me. This is where the clothes came into play. So that even when I’m covered up people still stare. For a 15 year old I think that was quiet an achievement. My confidence then went through the roof. I was no longer afraid to expose myself. I stared to get into relationships with girls, I would play football in just shorts. I even began to volunteer at the Vitiligo Society taking part in a DVD we produced about vitiligo.

Since then over the years my mum would take me away to hot places and gradually my vitiligo is still getting better, I am now only 20% covered (if that). I am now 20 years old, just over a year ago I proposed to the woman that I love, and she said yes. Not only that but we also now have a 4 month old baby boy. Throughout my life even after having accepted my vitiligo I was still worried that no one would want to settle down with me and have children. I was wrong, she supports me in everything that I do and I could not ask to blessed with anything more beautiful than my son, he is such a happy baby always smiling and playing. He even sleeps through the night. Even after those days that go on, I get home and one smile from him gives me such a boost. And the best thing about my life is, I wouldn’t change having vitiligo if I had the chance to. I honestly believe that my vitiligo has given me the compassion and love that I have for all things, I have not one nasty bone in my body, and I also believe that my vitiligo has given me the confidence that I have. All my friends and Family tell that I am Vein and that I Love myself. I say to them back ‘and’ I do love myself I think I am beautiful and I think that everyone else is beautiful. And the only thing in my life that I can put all that down to is my vitiligo.

I now work for the society and I hope to eventually be able to talk to (not council because I don’t agree with the term) young people with vitiligo, I want to be able to relay my experiences to them so that they know it’s not the end of the world, there is a very small percentage of people out there who are genuinely nasty people, everyone else is quiet accepting. I want them to know that they can find love. But it is all about believing in yourself. As long as you see your vitiligo as a good thing then it doesn’t matter about other people.

I am sorry for having typed so much, I hope you took the time to read it as I like to be able to share my experiences. I was mainly writing to start correspondence, I believe that eventually we will be able to get a forum going, which is accessed by members of vitiligo groups etc from around the world. On facebook alone there are 4 groups. If there was one big forum, with different topics obviously. Could you imagine the potential in that. I believe so many people would feel better about themselves and their lives with vitiligo.

Thank you for taking the time to read this, and I hope to hear form you soon,

Kindest regards,

Robert