Paul - Vitiligo, me and narrowband UVB
Vitiligo and I have been traveling companions for almost a quarter of a century now. I am 37 and started noticing the onset of white patches in my early teens, with relatively slow progress to elbows, knees, hands and feet by the age of 18. Then things spread rather rapidly and 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 and should carry a deep brown skin colour most of the year.
And that's the way things stayed for years until recently. In summer last year I started to notice 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 come November, when the sun and heat of summer had gone, the little re-pigmented spots were still there.
I was intrigued and enthused by this new development. Like many people I have managed to live with vitiligo for years now. Without doubt I have been helped in this by an amazing wife Ann and three fantastic children, Michael (12), Elizabeth (10) and Hannah (8); all of whom don't see the 'patchy side of me'. True friends and family don't, they just see you!
But I can't deny that vitiligo lurks and remains in the back of my mind almost continuously. It has affected my confidence and physically I couldn't say I have been totally at ease with myself.
So to see any re-pigmentation was a great discovery and led me to reconsider the various treatments available. I thought, perhaps, that if I could undergo some additional treatment it may help the body to re-pigment; something that my arms had already started to do themselves, albeit to a tiny degree. I had heard about many treatments but the one that caught my eye was Narrowband UVB.
The Vitiligo Society have a list of all the UK hospitals that offer this treatment and luckily the nearest was only two miles from home. So I went to see my GP and requested a referral to a consultant dermatologist; which she was happy to do. The consultant was extremely positive and after a discussion and examination, she agreed to put me forward for a 3 month trial. Narrowband treatment started in late February of this year.
Driving down to the hospital for the first appointment I was worried about what the treatment was like and whether I would burn as a result of the treatment. On both counts I can assure readers that my experience has been no problem.
Typically each visit takes about 20 minutes from arriving at the hospital to leaving. The treatment is handled very discretely and you dress and undress behind curtain screens that actually let you get in the machine without anyone seeing you.
The machine itself is a large rectangular 'box' where you stand for treatment. Each of the wails and door are covered in light tubes that switch on for the time period set by the hospital staff. The machine is open at the top so there are no problems with claustrophobia and the exit door is not locked so you can push your own way out once the treatment is finished.
I was started on a very low dose of around 20 seconds two or three times per week and 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 6 weeks for me before any re-pigmentation was achieved. Firstly on my face, which I believe is the most susceptible part of the body, where small dots of brown appeared on my forehead. Slowly other parts of the body started to show similar signs of re-pigmentation. After a follow up visit to the consultant in April it was agreed I should continue with the treatment because it was clearly having an impact.
Now (early May) all areas of my trunk and legs are showing re-pigmentation moving out from almost all the hair follicles. It looks like somebody has covered all my white patches with dots of brown felt pen. My hands and feet have not really shown much re-pigmentation as yet, although they are notoriously the hardest part of the body to re-pigment. 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. And lf can't tell you how uplifting it is when people comment on how brown I look. They are just not used to it and neither am I.
The Vitiligo Society have information available about Narrowband UVB and are able to tell you which hospitals near you may offer this treatment. I would urge you to find out more. Although no results can be guaranteed, my own experience with Narrowband UVB has been incredible so far.