I am a 37 year old who has lived with vitiligo for a quarter of a century.  In my early teens I started to develop patches on my elbows, knees and hands.  This constantly spread until about age 30, by which stage I was about 80% white. 

Through my work as trustee and volunteer with the Vitiligo Society (the Society) I became aware of a new treatment for vitiligo called Narrowband UVB (UVB).  It appeared that certain patients had achieved significant re-pigmentation through the treatment and that was enough for me to investigate further.

The Society had information on UVB and through their information leaflets and speaking to helpline staff I was able to get the background information I needed before visiting my GP to move things forward.

Then, as now, it was necessary to get your GP to refer you to see a Consultant Dermatologist at your local hospital.  I understand these referral arrangements might be changing soon, but the Society can advise on the best route to follow. 

I visited the GP and asked for a referral to see the Consultant to discuss UVB and they agreed right away.  It helps if you know a little bit about the treatment before visiting the GP and the Society gave me all the information I needed.

Things don’t work very quickly and my referral request in November 2005 took a couple of months before my appointment with the Consultant came around in January 2006.  But the wait was worthwhile and the Consultant meeting was very encouraging.  I discussed why I wanted to try UVB and the Consultant agreed it was worth trialling the treatment for a few months to see how things progressed.  It was necessary to have a physical examination, but I got to keep the underwear on which saved any excessive embarrassment. 

I volunteered to have all over body photographs taken, which meant I had to strip down to underwear again a week later, but it’s worth doing so you can see the before and after and thus clearly identify any progress.

A first appointment time was set with the Physiotherapy department who administered the UVB in my local hospital and in late February I turned up for the first treatment.  This first visit took about half an hour with a sit down chat first thing to talk about and assess my vitiligo and the UVB treatment.  Every care was taken to make sure the treatment was properly planned and all my questions were addressed.  And I had lots of questions, especially about how the treatment was carried out and what equipment was involved. 

The UVB machine itself 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.  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.  Men must cover genitalia and everyone wears eye goggles for eye protection.

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 didn’t burn in between treatments.  Generally I went slightly pink which is about the right amount of light exposure to get the skin working.

Typically each visit takes about 20 minutes from arriving at the hospital to leaving.  In my case the treatment was handled very discretely and you dress and undress behind curtain screens that actually let you get in the machine without anyone seeing you. 

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.

In early May all areas of my trunk and legs were showing re-pigmentation moving out from almost all the hair follicles. It looked like somebody had covered all my white patches with dots of brown felt pen.  The dots of brown on my face were starting to join up and my face had gone from 80% white to 90% brown.

By August my face was completely re-pigmented and my neck, arms, legs and trunk were 90% re-pigmented.  My hands, feet, knees and elbows were largely still white but a large number of re-pigmentation dots are starting to appear. 

It is now early September and I am still continuing to receive treatment.  I understand the current maximum lifetime dosage of UVB you can receive is 200 Joules, which means very little in itself.  But to put it into perspective after my personal treatment (starting with low doses), I am now up to about 55 Joules or about 25% of the maximum.  

  Paul Johnson 11/09/06