A journey of trial and error
My vitiligo success was a case of fourth time lucky. A case of trial and error, in fact, involving a couple of therapies that did not work, one near disaster and, finally, my success story. It felt like a very long and frustrating journey at the time. But I shall tell it as briefly as I can on this page.
I only ever tried 4 treatments for my vitiligo in my life. (Mostly, I just covered it up and learned to live with it.) Two were unsuccessful… One was dangerous… But the last was a total surprise. And, although I have learned to be cautious when it comes to raising my hopes of a total “cure”, it has proved – over a decade on – to be a lasting vitiligo success.
PUVA didn’t work for me
The first was when I was in my 20s. It was the only treatment I was offered by my doctor: a type of phototherapy and drug combination treatment called PUVA. Unfortunately, it was a complete failure in my case, in spite of being the vitiligo treatment of choice at the time. I suppose it just goes to show that what works for one person will not necessarily work for another.
A herbal remedy was disappointing
The second was when I was in my 30s. This one was a herbal treatment, Olive Leaf Extract, in the form of a supplement. [Note, June 2022: Interestingly, this is one of the ingredients in a new collagen formulation I have recently started using.] Having heard somewhere that this had produced some improvement for another Vitiligo Society member, I decided to try it. I did experience a very limited amount of repigmentation on my neck, using this, which was encouraging.
It seemed to me that the contrast between some of the other patches and the surrounding skin also became less noticeable. I also had the impression that it helped protect me against sunburn. However, I didn’t experience any further improvement and the patch on my neck gradually lost its colour again.
A mystery potion was a disaster
The third remedy I tried, in my mid 40s, was a mystery potion… And a disaster. It was a Chinese herbal preparation (with no available list of ingredients). I had to apply this topically before moderate exposure to sunlight. I used it on all the patches on my arms, legs and neck. (Thankfully not my face.) And sat out for around 20 minutes on a cool cloud-covered spring day. It wasn’t until some hours later that I found I had burned horribly as a result. And I spent the next 2 weeks looking like a serious burns victim. I was a mass of blisters.
The blistering was so severe that I was back and forth to the doctors for creams and bandages for several weeks. The only positive result was a minimal amount of re-pigmentation in the crooks of my arms, which has remained. But wasn’t worth the pain and the fear of permanent scarring. I am guessing this concoction contained psoralea, which sensitises skin to sunlight. It is explosive stuff if you use it without medical supervision. So my advice is please think twice before self medicating with products that have no clear information. Make sure you know what is in a remedy before you try it. And make sure you have clear instructions, ingredients and dosage guidelines.
If in doubt about the safety of any therapy, I highly recommend consulting your doctor before doing anything. Above all, beware of claims of universal, instant or guaranteed “cures”. If it seems too good to be true, it probably is!
Nutrition succeeded where other treatments failed
My fourth and final therapy is a natural, nutritional one. I came across it by pure chance when I took on a new brand of cosmetics for my make-up clients. [I was working as an image consultant at the time.] The same company also supplied nutritional and natural tanning products. So I decided to see if any of them might be helpful with my vitiligo.
I had read various pieces of anecdotal and clinical evidence suggesting nutrition could help. Certain amino acids, vitamins and minerals had been effective in treating vitiligo, especially in conjunction with moderate UV exposure. So I decided to take several nutritional products, including one that was being marketed as a natural tanning supplement.
Taking several food supplements at once (phased in over a period of weeks) was rather unscientific of me. It made it hard to know which of them was producing the results. But my own perception is that two – or, more likely, a combination of them all – are the main reason for my re-pigmentation.
Success with a nutritional approach
I have provided a full description of each product on a separate page entitled The Vitiligo Therapy That Worked.
I started taking the green ‘superfood’ supplement first, which made me feel more energetic and healthier. But it had no immediately visible effect on my skin. At this stage there was no noticeable re-pigmentation as such.
Roughly 3 weeks later I added the natural tanning supplement. And I started getting a moderate amount of sun exposure on a regular basis. (Luckily it was a sunny springtime, going into summer). Within a few weeks I started to notice a few freckles appear in some of the white patches. And these continued to develop over the following weeks and months, eventually joining up to produce normal looking skin. My chest and the patches around my eyes were the first areas to start re-pigmenting. I also developed a significant amount of re-pigmentation, in the form of freckles on my arms and hands, as you can see from these pictures of my vitiligo.
All of this was pretty exciting for me because I had never seen any real improvement in my vitiligo since it started when I was a toddler. I tried not to raise my expectations too high throughout this process. But couldn’t help feeling a sense of excitement.
I believe that correcting nutritional deficiencies reversed my vitiligo and gave me my skin colour back
It was all such a surprise, and a mystery, to me at the time. I could really only guess as to which ingredients had caused my skin pigment to start returning. It wasn’t until I did a lot more research into the ingredients of the supplements that I understood more.
This is a very big subject, which I cover in more detail in my blog. But, very briefly, the ingredients in Boost all feature very frequently in the literature on vitiligo research. And Five a Day contains extremely high levels of antioxidants (which vitiligo sufferers are known to lack and which help break down the abnormally high levels of hydrogen peroxide found in their skin).
I was ecstatic with my results because they proved a point. I still had pigment cells in my skin that were capable of functioning. After about 4 months (April – August 2009) a lot of new pigment that had started to appear. It seemed to be recovering in two distinctly different ways. The majority of patches were producing freckles of varying sizes. But others were simply turning a uniform milky pale flesh colour. (As opposed to the stark white they had previously been).
At this stage I suppose my skin was more peculiar looking than ever because I was now a variety of flesh colour, white, milky, and mottled! But I was so happy I didn’t care. I knew now that it had not died and gone forever. And I could see continued progress. i became confident of recovery for the first time in my life.
UV light accelerated my repigmentation
As summer was coming to an end, I replaced sun exposure with phototherapy. I seriously considered buying a sunbed. But I had just enough sense to know that this would be a potentially risky thing to do. Especially with no medical supervision. So I explained my situation to my GP. I showed her the improvements in my vitiligo and took the vitamin packaging with me to show her. Happily, she agreed to refer me for a course of narrow band UVB phototherapy. She agreed this would be a good idea and I began my UVB in the autumn.
The dermatology consultant at the hospital was happy to see such a massive amount of re-pigmentation. He found my story about the vitamin/mineral and superfood supplements intriguing. But he was understandably non-committal about the part they might be playing in my recovery. And he agreed that I should continue taking the supplements during my light therapy.
Some six months into my phototherapy some areas of vitiligo had completely re-pigmented. (The entire area under my chin and down to my adam’s apple, roughly 99% of my face, and two large patches either side of my waist). Other areas were almost completely back to normal. (My lower arms and chest – previously completely de-pigmented – and my spine, shoulders and shins.) And these were continuing to improve. Even the worst affected areas (backs of hands, tops of feet, calves and thighs) were all smothered with freckles. And these have continued to join up ever since.
A year and a half after I started to repigment my white patches no longer covered 80% of my body as they had at the start. I was now roughly 98% back to my normal colour. My hands and feet still had some mottles patches. But even these weren’t pure white any more and I could still see slight improvement – a very gradual evening out of skin tone.
Now, well over a decade has passed and I have not had any recurrence of pigment loss. In fact, I have actually continued to improve. This is contrary to most UVB vitiligo patients, who experience a relapse at some point after discontinuing light therapy. I believe this is because I am supplying my body with the nutrition it requires. And I firmly believe that my vitiligo had an internal cause that only a sustained internal approach could correct.
My vitiligo success: nutrition and UV light
After about a year and a half I was able to stop the UVB phototherapy and stop taking Boost every day. I now only take a short course of this supplement every so often. Just a couple of weeks once or twice a year. Usually whenever I know I am going to have more than average sun exposure.
However, I have continued to take at least one dose of Five a Day green food every day. My theory is that the nutrients in Boost triggered the repigmentation. But the green superfood keeps my general health at an optimum level and also reduces the hydrogen peroxide in my skin which would otherwise start destroying pigment again.
I also still sit in the sunshine several times a week during the summer months. And, happily, I am able to enjoy beach holidays now without worrying about having to cover up. Needless to say, I am ecstatic. I am now able to wear summer clothes for the first time in about 40 years without having to think about using camouflage or self tan. I also frequently go without make up, which is a first since I was a young teenager. But the best thing of all is this… Looking in the mirror without make up on and recognising myself as the “me” I remember. And no longer feeling like I am hiding behind a mask.