Vitiligo Society Trustee Alex shares his treatment journey, and how he found his personal vitiligo cure.
Let me introduce myself
My name is Alex and one of the characteristics I would highlight if I were to self-describe, would be that I am a control-freak. I obnoxiously like to plan my days in advance and have notifications beeping on my phone to remind me throughout the day of where and what I should be doing. So you can imagine my chagrin in having a skin condition which could result in completely unexpected white patches appearing anytime, any day, anywhere on my body. It’s a perfect storm – it used to exacerbate my anxiety which as we know is not great for halting the spread of the condition. This used to bother me a lot when I was younger – some days I would wake up in fear of what I might find.
Things are different now – I am older, hopefully a little wiser and have found my own way to cope with the anxiety of feeling helpless in the face of a condition which quite frankly could not care less about how I felt about it. As a trustee for the Vitiligo Society tasked with partnering with the medical and scientific community, I have spent a good while reflecting on whether this was an appropriate forum for me to be sharing my personal journey with vitiligo. After a great deal of thought I decided that, whilst not conventional, my experience could help others in my position, so on that basis here we go.
My treatment journey
I believe that we all have a unique relationship with our skin and the psychological implications it might have – for me, I had tried virtually every conventional (and perhaps less conventional) treatment method out there. I had bathed in the Dead Sea in Jordan, I had travelled to Cuba for placenta-based ointments, I had done my fair share of sunbathing and UV-B exposure with topical creams. The results were all personally disappointing for me. I will say this however, I believe that there has never been a more exciting time in terms of medical treatments – we have the first FDA-approved topical treatment for re-pigmentation, and the amount of research in the field is only increasing as covered in our recently released article summarising the current state of vitiligo research.
In fact, I found it somewhat endearing when I was scrolling through the vitiligo subreddit the other day and one user was asking what the big deal around the skin condition was considering we have a treatment available (in the US) which has shown high success rates on re-pigmenting facial lesions, and tattoos could be used to cover more stubborn areas on the body. As was subsequently discussed in the thread, this is somewhat of an oversimplification given certain factors such as remission and efficacy in segmental vitiligo. Nevertheless, I could appreciate the sentiment of the initial comment given my personal experience of decades worth of less enthusiastic treatment opportunities where it was almost taboo to speak about a ‘cure’ and ‘vitiligo’ in the same sentence. I’ll use this as an appropriate segue to present how tattoos became my own personal cure for the condition.
I started my tattoo journey just over three years ago now. I had first decided to explore medical tattooing, whereby pigment is injected with the aim of matching the natural skin tone. This type of procedure is also called micropigmentation, microblading or semi-permanent makeup. It has many different applications such as creating permanent eyebrows, covering up scars and in my case, filling in vitiligo patches.
One of the questions I always had was how this type of procedure differs to conventional tattoos – the answer has to do with the depth in which the pigment / ink is deposited into the skin. Conventional tattoo ink goes into a deeper layer of the skin called the dermis, whereas medical tattoo pigment sits a layer above in the epidermis.
This detail does not really change much in terms of the actual tattooing procedure – techniques and tattoo guns can be quite similar. One effect however is that pigment from medical tattooing has a shorter lifespan in comparison to its counterpart. This is because our skin is constantly shedding its outermost layer and since pigment sits in this more superficial region, eventually it too will be removed from the skin. This can last anywhere between 1-10 years.
Weighing up the risks
During the initial consultation for medical tattooing, there are a series of questions in which practitioners will routinely ask and in my experience, there is sometimes some reluctance to proceed if certain conditions are not met:
- Stable vitiligo for the past few years.
- Relatively small area to be tattooed.
- Reasonable expectations of outcome.
The reason for this I have concluded is that medical tattooing can be a wonderful solution but is by no means for the faint of heart. Active vitiligo does not respond well to skin trauma and so tattooing, medical, or otherwise, can exacerbate the spread of the condition through something called the Koebner phenomenon. Another consideration is that pigment does not always get absorbed by the skin and will more than likely require several passes to achieve the desired outcome. This is due to the immune system identifying the more superficial tattoo pigment as a foreign substance, rejecting it as part of its natural defence mechanism. The key factors which will influence success rate of pigment absorption are the location of the targeted area, skin-type, practitioner expertise and tattoo aftercare.
Although the price tag associated with the procedure is in my experience on par with conventional tattoos, there is an important difference in so much that the pigment is not guaranteed to stay within the skin after the procedure and even if it does, it will only remain for a limited timeframe.
Finally, it can take a long time to effectively cover large areas of vitiligo skin and requires a skilled practitioner to find the right pigment that will create a smooth blend with the non-affected skin. The reason this can be difficult to achieve is due to the Tyndall effect, which results in a different visual perception of the pigment colour once it has been deposited within the skin. This effect is also the reason why pigment cannot be placed at the same depth as traditional tattoo ink since the resultant skin tone match is even harder to achieve.
Finding the right practitioner
I was very fortunate to have found a very skilled medical tattooist in Hina who had extensive experience with vitiligo skin and was willing to embark on this project with me despite the notable disclaimers. My advice for anyone looking to pursue this type of procedure would be to have a very frank discussion with the practitioner about objectives and expectations – take the time to research their experience with vitiligo, ask for photo examples and most importantly, make sure to keep expectations and patience in check. Although there is no guarantee that this type of procedure will yield successful results for everyone, the same can be said about any treatment and for me at least, the associated caveats were worth enduring.
I had been visiting Hina on almost a monthly basis for medical tattoos for about a year and a half before I started researching how conventional tattoos could also be used to camouflage vitiligo patches. When I was younger, I never thought of myself as being someone who would be covered in body art but having gotten medical tattoos for the past years, it was a more natural transition.
There are also many practical arguments in favour of conventional tattoos:
- Longer lifespan.
- Ability to cover extensive areas.
- No need to blend with natural skin tone.
- Higher accessibility given prevalence of tattoo artists.
- Artistic designs can be used to complement vitiligo.
My guide to getting inked
I had formally decided to start using conventional tattoos in combination with medical tattoos almost two years ago and have found the process to be similar in certain ways, different in others. The key difference I have found is that conventional tattooing has a certain permanence and stand-out characteristic which requires a greater level of pre-meditation. This is the case whether you have vitiligo or not. There is an additional layer however in taking the time and diligence to consider what design would work best in conjunction with vitiligo skin.
Some of the questions I would personally consider are as follows:
- Would I be happy with getting this tattoo even if I did not have vitiligo?
- Would the design be problematic if my vitiligo were to expand?
- Does the location of the tattoo seem sensible?
- Does the tattoo artist understand what I am trying to accomplish?
Eventually I had taken the plunge and although it was a bit of an initial shock, I have gradually been expanding the amount of conventional ink on my body. And if I’m being truly honest, I have grown to truly appreciate this artform to the point that a lot of the tattoos I host now are not even for the sole purpose of camouflaging vitiligo.
My final message to you
I would like to conclude by going back to the initial discussion point around whether a definitive cure for vitiligo is currently out there. It’s a tricky question, and not even for the more obvious reasons. Almost daily I am reading optimistic stories from the online community around the use of Opezelura and the pioneering work Dr John Harris is paving in the space, and this is no small reason to rejoice. But I would like to take a small step back and perhaps ask that you indulge me in the following train of thought.
When I had first been diagnosed with vitiligo as a young boy, I had always felt that the only way I would be cured would be through re-pigmentation and I would only be satisfied once there was a medical solution to achieve that. It has now been over 20 years since I had first been diagnosed and had travelled the world looking for that elusive treatment. Looking back now, I think to myself – was it all truly necessary? I have a wonderful partner now who I know couldn’t care less about my patches, but in the end, I did this for me. This is what worked for me, and I’d encourage everyone to find the thing which works for them. For some that will be medical treatments, for others it may be nutrition or alternative treatments, for me it was tattoos and for many others, it will be nothing at all.
With that, I would like to finish by answering the age-old question: is there a cure?
Yes – it just doesn’t look the same for everyone.
I’ve included a few links I found useful in the past and would recommend having a look at for more information on getting tattoos if you have vitiligo.