Why Dermatologists Say There is Hope for Those with Vitiligo
We’re all about owning our spots – that’s something that is never going to change. But while we’re embracing the skin we’re in, we’re often also pursuing treatments and using makeup to make this spotted life just a little easier. So we spoke with one of the leading vitiligo dermatologists to get an update on the state of vitiligo research today – and we have good news.
We posed some big questions to Dr. John Harris, director of the University of Massachusetts Vitiligo Clinic and Research Center and part of the Vitiligo Working Group. A dermatologist and scientist, Dr. Harris filled us in on where they are with treatments today, what we can expect and whether or not a cure for vitiligo is in the future.
Before we dive in, let’s clarify the difference between a treatment and a cure. A treatment means that you seek a solution and your vitiligo gets better, but has the potential to come back if you stop pursuing the treatment. A cure, on the other hand, is a solution that you pursue for a fixed period of time and then your vitiligo never returns.
Here’s what Dr. Harris had to say about vitiligo treatments and the possibility of a cure:
Why we need better treatment for vitiligo
Ask those with vitiligo why they aren’t pursuing treatments and you will find common themes – it’s too expensive, it takes too much time and it just isn’t working fast enough. John was quick to echo these points, even as he works hard every day to treat the spots of his patients.
“The majority of my patients get significantly better,” said Dr. Harris, who has worked in the clinic for six years. “But we wish it didn’t take so long to work. People have to come into our office two to three times a week for multiple years to get the results they want.”
His short-term goal is to help get better treatments on the market for those with vitiligo. And the good news is that these treatments are coming faster than expected.
Why there is hope for better vitiligo treatments
It might not seem like it, but vitiligo research and treatments have made significant strides in the past few years. According to Dr. Harris, scientists have identified some of the pathways that cause vitiligo and even better, drugs that inhibit those pathways are already in existence today.
“We don’t have to create the drugs, we just have to show companies that these existing drugs work for vitiligo,” said Dr. Harris. “It typically takes up to 20 years to start from scratch and move a drug into the market and we get to skip that because these drugs already exist.”
The next step is to convince companies to invest money in clinic trials to test the results of treating vitiligo with existing drugs, explained John. After a year or two of testing, the results can be submitted to the FDA, which could approve it for market. The entire process could be completed in just three to five years.
Finding a cure for vitiligo
The news on treatments is great, but we have an even bigger question on our mind: is there a cure for vitiligo in our future? It’s the kind of question where you hold your breath and wait for a response that you aren’t sure you actually want to hear. As it turns out, Dr. Harris had even more good news.
“There are very few things we cure in medicine,” explained Dr. Harris. “But I would like to get to a cure and I do think it’s possible. My goal is to get there before my career is done.”
What is the best treatment so far? My 12 year old has got it and any answers are welcome
Sharon, great question! We got in touch with some experts and found a lot of answers. There is a general consensus that the earlier you treat vitiligo, the easier it is to treat, but treatments do require time and commitment. Here is a specific response about a list of therapies that have proven successful according to Dr. Pearl E. Grimes, Director of the Vitiligo and Pigmentation Institute of Southern California in Los Angeles, California, and member of the Vitiligo Working Group Board of Directors: topical steroids (medium to high potency), calcineurin inhibitors (tacrolimus, pimecrolimus), targeted phototherapy (Excimer Laser), Narrow Band UVB phototherapy and autologous grafting procedures.
How does the type of food we eat impact vitiligo? Does it make a difference at all?
Alene, thanks for the question! We asked the experts and here’s what we learned from Michelle Rodrigues, consultant dermatologist at St. Vincent’s and The Royal Children’s Hospital in Melbourne, Australia, who works with the Vitiligo Working Group: “Some research suggests that anti-oxidants may help those who have already been diagnosed with vitiligo. Examples include vitamin C and vitamin E. It is really important however, to discuss this with your dermatologist first to ensure the right types and doses of medication are used.” Have you discussed nutrition with your dermatologist?
What wonderful news! This article will give a lot of hope to those with vitiligo.
Great questions! We’ll ask the experts and let you know.
Greetings! Very useful advice within this article! It is the little changes which will make
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Hi 🙂 My vitiligo story is quite complex, but I may have some information that might help others on this topic. I have had vitiligo since I was 25, I am 32 now and 8months post Partum. It started on my hands, mainly just my fingertips and since I had my baby it has taken off. Spreading everywhere. Fast. My diet post baby is poor as is my sleep and stress level. My brother had vitiligo in his teens. I say had, because he is 98% healed and living with only a couple faint spots on his arm. My mother spent a lot of time when my brother was diagnosed trying to find any information possible to help him. Dermatologists simply did not get it. After seeing a holistic doctor in NY, and changing his diet and taking a number of supplements, he began to repigment rapidly and within one year all of his spots were gone. So when I was diagnosed, I couldn’t believe it, but I felt that maybe I would have this for a year, make some changes and boom- healed! Well my vitiligo as I mentioned above, remained completely stagnant for almost 6 1/2 years. No progression, my spots easily masked with sunless tanner, my life went on. Now, I have a spot just about everywhere on my body- some small, less than the size of a dime and some the size of a rigatoni noodle lol. So I felt like it was time to call in the big guns. I scheduled an appointment with Doctor Blûm, the author of the book “The Immune System Recovery Plan,” she happens to have a practice not far from me. Before I visited her, I read her book. Mainly using the table of contents to read anything and everything she has written on vitiligo. I felt hopeful- if anyone was going to “fix” me, she would. Within one lengthy visit, I was asked to eliminate the following from my diet: gluten, dairy, soy, sugar, shellfish, alcohol, and corn. I did this for 21 days. While I was doing this I was taking a number of supplements provided by her in conjunction with Clobetasol, a prescription topical cream I got from a dermatologist. The spots on my hands, not my fingertips, repigmented really fast. After the 21days, I was asked to add each of those “banned” items from my diet back in, a few days for each. I was asked to take notes on any reactions I may have adding them back in. Dairy (an issue with my stomach) and corn (digestive pain). So my dilemma, what is triggering my vitiligo? Is it food? I am currently in the second phase of the process- a gut cleanse. Some bloodwork came back high for possible SIBO- small intestinal bacterial overgrowth, basically my small intestine has small gaps or holes which are not allowing good nutrients to pass and are allowing bad nutrients to seep into my system- voila! Or is it? I came off the diet for 2 months and noticed several new spots. So now I am now working on maintaining a strict gluten free diet as well as eating only organic fruits and veggies and grass fed meats. I am staying away from anything acidic, as she told me that acid feeds vitiligo and burns at the intestinal lining- I am convinced that diet is key. My brother is the success story of that. But I do believe supplements are vital- which ones, I’m not sure yet, I am taking a concoction of so many- I won’t know if it’s just one or the many helping. I must also add I took a number of blood tests, stress tests, allergy tests from her office- nothing came back other than the high SIBO readings. But from what I understand, no matter the results the doctor puts everyone on the same healing plan. Since vitiligo is autoimmune it can be treated the same way she does someone with diabetes, hashimotos or alopecea to name a few. I am going to be very strict in the upcoming weeks with my diet- back to eliminating everything again to see if I have any more success. I hope some of this info helps, I am a work in progress. I am trying to stay positive because I know stressing will make it worse- easier said than done, right?! Thanks for reading!
Danielle, amazing story, thanks for sharing! I know there has been a lot of conversation about the impact of food and nutrition on vitiligo. Sounds like it would be a great future post on the blog. Keep us updated on your progress!
Dear Danielle,
Thank you so much for sharing your story! It gives hope.
My daughter, who is just 10, has vitiligo. It is so hard to cope with it.
Hi Danielle,
Very encouraging words. Would it be possible to send you a private message?
Thanks,
VD
Danielle! Would you please message me? Spoe99@gmail.com
Stefanie poe u can find me on Facebook
Arkansas
I would like to consult to the doctor too. Please give me tye contact details . I am a vitiligo sufferer and seeking for any kind of treatment.
Hi Danielle please let me know about your progress now as I am also going through the same since last 12 years and it makes me feel so down and not able to concentrate on anything. I think just because of this I am not missing a lot in my life.
Thanks,
Rita
i am from nepal. My girlfriend got virtiligo when she was a child. (foot and hand) now she is 18. She got no treatment since from her childhood. please suggest us what should we do now? My english is not good hope you understand.
Bikram, thanks for posting! I would highly recommend seeing a dermatologist that specializes in vitiligo to get access to treatments.
My husband has vitiligo and m worried about my kids how much are chance they will suffer from it? And what can I do to save them
Annie, thanks for asking. It’s my understanding that there isn’t anything you can do to prevent vitiligo at this time, but I would recommend that you consult with a dermatologist for an official answer.
I have heard you could make your own uvb phototherapy unit at home by using reptile lights… is this true?
Ashley! Great question! I haven’t heard that before, but I would suggest consulting your dermatologist for the correct answer.
Hi I’m Christine. I first got vitiligo at the age of 4, and have had it since then – I am now 47. Unfortunately I was in a stressful abusive household growing up and received no support for vitiligo. I lucked out because the vitiligo was mostly only on my shins at that time, so I could hide it with long pants, stockings etc and pass as “normal”. Later on in my teens I learned how to avoid the sun so my vitiligo blended in even more. When I was 28, I went through an extremely stressful time and got a giant new patch on my lower abdomen over a foot long – that was devastating. I finally sought help and a doctor explained how to cover it with self tanner. I then found the vitiligo community online which was a real blessing. I was addicted to the vitiligo websites for about 3 years. I tried a bunch of treatments like Eximer laser – even a melanocyte transplant by Dr. Paul Munish in India, but it didn’t work – it just turned the area where I received the transplant pink – AND caused me to have another spot where they removed the doner cells. Bummer – but at least I tried. I’d like to try the Dead Sea next, if I can ever get a month off. 4 years ago, I was hurt by moving into an apartment in NYC that had toxic mold. I spent 2 months off of work and suffered symptoms like scary heart palpitations, joint inflammation and chronic fatigue. I knew things had to change and I moved to a cottage in a rural area to fully heal. During the past 4 years and especially in the 3 years that I’ve lived in the cottage, I switched to a mostly organic diet including grass fed meats, organic vegetables never sprayed or genetically modified, and bone broth made from fish, chicken or grass fed beef marrow bones. Bone broth is very healing for the lining of the intestines and therefore the immune system. I learned what foods and supplements my individual body needs by studying the work of Dr Nick Gonzalez (now desceased) and his surviving partner Dr. Linda Isaacs, and I made sure to take these every day by starting a bullet journal to track my daily habits. I also worked on cleaning up my emotional life, getting rid of all Narcissistic/Cluster B individuals from my friendship group and relationships (I had allowed them in my life from being raised by my parents who were Narcissits), healing from CPTSD (Complex Post Traumatic Stress Disoder brought on by my childhood parental situation), processing what had happened in my childhood and working on modifying my behavior patterns to suit who I am today. It’s required a lot of education and journaling but I have changed a lot and become a calmer, more adult person. I’m also studying Minimalsim on YouTube to learn how to reduce stress even more. The result is that almost all my vitiligo has brown spots in it. My legs are almost fully healed. My lower abdomen spot has started to heal in at the sides – it’s the most stubborn but it really is healing. Any place I have hair follicles like my legs, lower back, etc I have brown dots all over the vitiligo and in some places it’s almost gone. It even started to heal at my ankles, where I have no follicles. In the wintertime it comes back a little bit, but in the summers it shows more and more progress every year. Every Spring, Summer and Fall I run and exercise outside in my yard, get sun and breathe the clean air of my rural location deeply. I have no stressful neighbors or loud sounds like sirens, people arguing etc like I had in NYC. I get my drinking water from a real spring in a nearby State Park where the water has been tested – it’s the best water I’ve ever tasted and all natural and pure. I hope my healing can continue each year until the Vitiligo is all gone -I would love that! I still have to use my self tanner on my ankles, lower abdomen and a little bit on my thighs – a great brand is Brazillance by Tarte – it’s an aqueous gel, so easy to control. Have you guys heard of Copper 5 body lift cream? It’s supposed to heal vitiligo since we are supposedly deficient in Copper? Wondering if anyone has tried that, there are some videos on YouTube about it.
Christine, thanks so much for sharing your story – what a journey! I haven’t heard of Copper 5 – I’ll have to check it out.
Christine, thank you so much for sharing your experience. I find it amazing how cleansing your emotional health has had such a big impact on repigmentation.
I would love to hear more from you.
I always believe that emotions are a major player in my autoimmune disease.
This blog was… how do you say it? Relevant!! Finally I’ve found something which helped me.
Cheers!
Dewey, so glad! Thanks for that note of encouragement and welcome to Living Dappled!
My teenage daughter has vitiligo and it is very stressful for her. She spends many hours covering up her spots with makeup. She has them all over and the products she needs are expensive. We are pursuing light therapy and other treatments and I hope a cure is found, but mostly I’d like to help her deal with the psychology impacts of vitiligo. She is a beautiful, smart and talented girl and I want to help her be comfortable with herself just the way she is. What I am looking for is a support group of other teenage girls with vitiligo. I think if she could connect with people and make friends with others in her situation it would help her so much. Do you have any suggestions? I appreciate your help!
Leah, thanks for the message! I can relate – as someone who wears tanner to cover my spots, I know it can take time and also be stressful to go without it. I don’t know of any support groups specifically for teenage girls. However, you can find in-person support groups here: https://www.globalvitiligofoundation.org/support-groups. And we’ve shared a list of great Instagram accounts to follow for digital support and inspiration: http://livingdappled2.wpengine.com/28-instagram-accounts-to-follow-if-you-have-vitiligo/.