My close relationship with Vitiligo by Carol Hills

My "close relationship" with vitiligo began in my teens (around 14 years of age). The knuckles of my hands turned white, which over time spread to a wider area.  It then appeared on my knees, elbows and feet, and thereon over the years to other areas.

At first I was told by a GP that it could be a fungal infection but eventually I saw a dermatologist who diagnosed vitiligo.  I was then given a course of ultra-violet lamp sessions on the affected areas. This was time-consuming and I had to wear a pair of goggles during the sessions, which were not at all flattering and which left me with white panda eyes in an otherwise reddened face.   This treatment did not help at all; in fact it was made worse as the areas around the white patches just became more tanned.  Eventually I was told there was nothing more that would help and I just had to get on with life.  Around this time I began to suffer with what was then termed "nerves", which gave me other things to worry about.  My vitiligo did spread but quite slowly.  Each year either my patches grew bigger or a new one would appear, and I learned to live with it.

After marrying and having two sons my next close encounter with vitiligo happened when my second son developed it at age 4. I was horrified because I had been told it was not hereditary. In my son's case it spread much more quickly and to most of his body, including his face.  He did not cope with this well at all and wouldn't talk about it.  In fact he is now 36 and still doesn't talk about it.  He and his wife have a beautiful 6-year-old daughter and I must admit I do worry in case she develops it. I am always on the alert in case there are any signs. My other older son did not develop it, neither has his son or daughter, for which I am thankful.

Through the years there have been times when I have been very self-conscious about my patches, although I am very much aware that I am lucky in that I am fairly pale skinned. Through your society I now know that there are others far worse off then me.

Although vitiligo sufferers are advised to stay out of the sun, I do enjoy the early morning or late afternoon sunshine and believe that sun generally makes people feel happier, if not necessarily healthier. I used to use lots of high factor sunscreen and still do to a certain extent. However, for the last few years I have been much more comfortable with myself and don't bother to try to hide it. It is particularly helpful if people are genuinely interested and ask questions. I must admit though that I do rather hate my feet! In the summer these are totally white, on the end of fairly tanned legs. Unless I am going outside in the sun for long periods I now only use one of the new tanning moisturisers (I use Dove). I find this just takes the edge off the white patches and as I can't stand the feel of make-up this has been a real boon for me.

As far as treatment goes I have never been asked about my patches when seeing a doctor about something else, so I presume that nothing can be done still. The only treatment I ever had was the ultra-violet, albeit a long time ago, and I also did once have instruction by the Red Cross in the use of cover creams. Although I got an excellent result with this I found it too time-consuming, and I really don't like the feel of make-up.

I am now 61 and can honestly say that I am comfortable with my close encounter with vitiligo. I certainly would not class it as being a friendly one, but with the help of the Vitiligo Society and, I suppose being older and hopefully wiser, I now see it as a part of my unique self. Of course there are some things I don't like, mostly the worry and guilt of passing it on through the family.

When I retired from my job I was excited but slightly worried about my new found freedom.  I decided I wanted “a new lease of life” and I joined a gym.  I also like to go swimming, which is an activity that I would not have done during my “vitiligo self-conscious” years.   Having given this a lot of thought only recently, I believe that until there is a medicinal cure for vitiligo (and I have no doubt there will be) then the way forward would be positive thinking and self-confidence, provided by good psychological counselling.  I found my new-found confidence myself, gradually through the years but I believe many people with vitiligo would greatly benefit from this type of support