Can vitiligo depigmentation therapy be reversed?

Last Updated on 11th March 2020 by Caroline Haye

Joel shares his experiences of losing and regaining his skin colour

Most vitiligo therapies are designed to prevent or reverse pigment loss. But in extreme cases – typically when an individual has lost more than 50% of their skin colour – a more drastic approach may be used: total, chemically-induced depigmentation. This involves the use of a prescription-only bleaching agent (Benoquin) to remove the remaining pigment with the aim of achieving a uniform, white skin tone. Most famously, this is thought to have been the vitiligo treatment that Michael Jackson chose as his condition progressed. Normally, this therapy is process is permanent. But can vitiligo depigmentation therapy be reversed? It seems the answer is yes.

Depigmentation therapy requires very careful thought, and discussion with a dermatologist, beforehand. As it is usually irreversible it is generally kept as a last resort. So Joel – a 33 year old Programme Manager from Weston-super-Mare – was all the more surprised when the effects of his depigmentation therapy began to reverse and his pigment started to return. I asked him if he would be willing to share this remarkable story in this blog, and also tell us how vitiligo has affected his life in general. He very kindly agreed to the following interview.

When did your vitiligo start and how it has developed since then?

I first developed vitiligo at the age of 20, having noticed a white patch in my groin area. I went to my doctor who treated me for a fungal infection. After using a number of different fungal creams the doctor sent me to a dermatologist who confirmed I had vitiligo. My vitiligo seemed to initially spread quite rapidly affecting: face, hands, armpits, torso and feet. Due to the lack of repigmentation treatments available I was prescribed monobenzone to depigment the remaining skin. For 10 years I lived with pale depigmented skin up until around 10 months ago when my skin began to repigment.

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Do you have any other health problems that you suspect might be connected?

I haven’t had any other health problems diagnosed. Around the same time as the onset of my vitiligo I remember having very bad digestive issues, which looking back now may have contributed to the spreading of my vitiligo.

Does anyone else in your family have vitiligo?

No-one has officially been diagnosed with vitiligo in my family, however, I have recently found out that both my Aunties have a few white patches on their skin which look like vitiligo.

When and how was your vitiligo diagnosed?

I was diagnosed by a dermatologist when I was 20 years old.

What was your initial reaction?

I was devastated when I was first told I had vitiligo. I didn’t want to believe there was no cure for it and I was worried how the condition would affect me.

Do you have any theories as to what caused or triggered your pigment loss?

Looking back, there could have been a number of reasons why I developed vitiligo. However, I do feel that the stress which I put myself under during my first year of University, coupled with my digestive issues, didn’t help. I also got badly sunburned during the same year I was told I had it, which I think accelerated my vitiligo.

What has been your experience of the medical profession?

I have not had a good experience with the UK medical profession. When I was first diagnosed with vitiligo I was told I had to learn to live with it and was offered no treatment. Furthermore, I feel I should not have been prescribed monobenzone even when I asked for it, as my skin was less than 10% depigmented. Looking back I would have rather the doctor prescribed me with Protopic or allowed me to undergo phototherapy. I think it highlights the lack of knowledge some doctors had regarding vitiligo at that time.

When did you first notice a reversal of your depigmentation?

There were a few occasions once I used monobenzone when my body showed signs of some repigmentation, mainly on my arms and hands. However, it wasn’t until around 10-12 months ago when my body seemed to start to repigment in other areas (face, neck, legs etc.). I was amazed how well my skin was reacting, and given that I hadn’t  tried any repigmentation treatments, I felt my body was giving me a sign to try something (sounds weird I know!).

At this point I thought it would be a good idea to use UVB alongside changing my diet and taking various supplements to aid the process. I haven’t looked back…..

What alternative therapies have you tried and with what results?

I tried Chinese alternative medicine which didn’t seem to work. I have recently been taking Boost, Five-a-Day alongside Ginkgo Biloba, Vitamin B12, Folic Acid and other vitamins/minerals which seems to be helping my repigmentation alongside UVB exposure.

How has your doctor reacted to the reversal of your depigmentation therapy?

To be honest when I first visited the dermatologist she didn’t seem interested. I think mainly because I forced their hand a bit monitoring me while I’m using my UVB panel. I have another appointment in a few weeks where I hope she will show a bit more interest!!!

How useful, or otherwise, have you found the internet?

Over the past couple of years I have found the internet very useful, particularly personal blogs such as The Vit Pro. I think it’s important people share their personal experiences to educate other people with vitiligo.

What have been your feelings about your vitiligo and what coping strategies have you used?

I have struggled immensely with my vitiligo in the past. However, I am slowly learning to cope with it. My main coping strategy is through talking to people, people with and without vitiligo. I also think education is key, not just for yourself but for others too. Take the time to check in now and again on current day vitiligo research and you will see the progress which is being made. I am excited, and believe, we will see breakthrough treatments for vitiligo in the next few years.

How did your family and friends react to your vitiligo?

My family has been very supportive in learning about vitiligo which has helped me begin to learn to live with it.

How have strangers reacted to your white patches?

Very few people have asked me about my vitiligo. When I depigmented, I got the odd joke comment about my pale skin, while others said I made me look younger! Today, as I am repigmenting, people who comment on my skin say it looks like freckles.

How has vitiligo affected your everyday life?

Vitiligo has made me very body-conscious. Particularly the clothes that I wear, things that I do, and where I go on holiday. However, I know that it takes time to learn how to live with vitiligo and I am on that journey.

Do you think vitiligo has changed you as a person?

Vitiligo has changed me as a person. In the beginning vitiligo turned me into a recluse, whereas before I was very outgoing and enjoyed the outdoors. Over time, I am trying to learn how to remove these emotional barriers and live life how I want to.

What have been the worst things about having vitiligo?

Knowing that currently there is no cure and understanding how vitiligo can negatively impact someone’s life. I am confident that we will see a breakthrough in vitiligo treatment.

Have there been any advantages of having vitiligo?

I have met some great people along my vitiligo journey.

If you could offer any advice or inspiration to others with vitiligo, what would it be?

Try and remain positive and talk to people. Talking has been the main coping mechanism for me and has enabled me to put many things into perspective.

Research into vitiligo has accelerated rapidly in the last few years and offers a positive insight to future treatments. Although we may look different, what you see and what other people see can be very different. Everyone has opinions….so what? Why should that affect the way you feel about yourself? In my experience, people care about the person inside, not what you look like.

Don’t allow others’ opinions/comments affect how you feel about yourself. They generally come from people who don’t care about you or even know you. For example, would you listen to someone who doesn’t have a clue what they’re talking about……probably not, so why listen? Learn to ignore any negative comments and hold your head up high. Live the life you want to and try to break down the barriers which prevent you in doing so.

Thanks for sharing…

On behalf of everyone reading this interview, I want to express appreciation to Joel for sharing his vitiligo story and photos with us. Allowing publication of such personal thoughts, experiences and pictures is never an easy thing to do. But it is immensely encouraging and inspiring to others and shows a strength and generosity of spirit that characterises so many of the vitiligo friends I meet. Thank you so much.

For more real life examples of re-pigmentation, go to the Vitiligo Success Stories page.