It’s perhaps the most important question we receive on this website: Does Vitiligo Go Away?
The simple one-word answer to the most important question about vitiligo is: Yes! Getting vitiligo to actually go away for you may not be so simple.
Absolutely, vitiligo goes away.
But how? That’s the rub. How does vitiligo go away for you?
There are 5 core ways to make vitiligo go away, all of which I cover in our webinar linked below, but I’ll outline some key issues here in this post. Each person is different, and developing vitiligo is caused by different, individually specific problems.
How Vitiligo Manifests
Each person that develops vitiligo has a unique path, but there are some common issues. These concerns are:
- autoimmune – the bodies defense system mistakenly attacking healthy cells
- thyroid issues
- digestion issues
- malnutrition
- damaged or underperforming organs
- unmanaged stress
- unhealed injuries
Many people report that vitiligo develops after breaking of the skin. Perhaps a cut or scrape of the skin occurs for someone and when the skin heals, a spot of vitiligo forms. For others, vitiligo develops in a time of significant emotional stress.
One mother told me that after her son was drafted into military service in the midst of a war, she developed vitiligo because she was worried about her son and safety. Another woman wrote to me about developing vitiligo in the midst of a painful divorce. Sometimes job-related stress is a precursor. Losing a job is incredibly stressful. Other’s both men and women have told me about break-ups being the stressful precursor to developing vitiligo. The list of potential emotional stressors is endless and unique.
Humans are unique and their stories are precious and rich with personality and human frailty and strength.
Vitiligo is sometimes a side-effect of many things. Sometimes people can’t point to anything specific or obvious that preceded the development of vitiligo.
My Vitiligo Story
For myself, it was a skin abrasion. The skin healed, and a spot of vitiligo was left behind that didn’t really change until years later. After college, I went to work for a startup in Silicon Valley, and after being a contractor for 4 months I was hired full time. It was exciting to be learning new skills and applying them in a dynamic environment. I worked hard, did well and started eating out and drinking a fair bit. I’d probably eat out for one-third of my meals and it was rich food I was eating. Burgers with onion rings and a beer. A steak with french fries and a half bottle of wine.
I explored wine and beer for a while, developing a taste for the good food and drink. It was fun. Until I realized my vitiligo had spread to a second spot on my thumb. Then it spread around my hand, and fast. Then my feet, then my face.
Then I freaked out. Sound familiar?
Going to the Dermatologist
I went to the dermatologist, the best I could find in the area. I spent 9 months in standard medical treatments for vitiligo. Simple at first, I would sit in a uvb light box for a min or less. Then, every week, the time would go up a bit. After 6 months the appointments, 3 times per week, were lasting 30 mins in the uvb lightbox. Then after 9 months, it was up to 45 mins, then almost 1 full hour. With drive time, checking in and out of the doctors, and time in the box, it was taking 1.45 hours, 3 times a week. about 6 hours per week, sitting around, getting the darkest tan I’ve ever had and re-pigmenting vitiligo. It was working.
But even though I was seeing repigmentation, it wasn’t working for my life. I didn’t see how I could do this schedule of treatment for the rest of my life. How long would I need to do this? When would it end?
A Second Medical Opinion…
I went to see a second dermatologist that was an Adjunct Professor of Dermatology at Stanford Medical School who also had a small family dermatology practice.
I’ve never been to a doctor like this before or after.
He was incredible. He took the time to listen, to ask questions and to understand me before telling me anything about my disease or the solution. He wanted to know my challenges, my questions, my anxieties. That took 20 mins of the appointment. The part of the conversation that made my jaw drop, that made me realize this doctor is different was when he looked up from his notepad he had been writing in to ask me: Is there anything else that’s on your mind before I go about answering your questions and explaining your options? I thought, well is there anything else? And there was. I was concerned about things I had read on the internet about the potential side-effects of the standard medical treatments for vitiligo. And with that, the doctor began addressing my concerns.
First, vitiligo has no cure. And as far as I can tell, this is still true today. Vitiligo does not have a cure.
Second, the doctor made sure I was clear on this: all standard medical treatments of vitiligo are carcinogenic. This is information that the manufacturers are providing. So the makers of the UVB light boxes that you can get for home use or in the doctors office increase your chances of getting cancer. Hmmm. Cancer. Ok. Noted.
The first dermatologist had not told me this when I had asked. And this first dermatologist was no slouch. He was in charge of two different dermatology departments at major California hospitals and was then running one of the largest high end dermatology departments in Silicon Valley. I asked: does this UVB treatment increase my chances of getting cancer. And the simple answer is yes, though it’s not as serious as other forms of light treatments. Elidel was perscrined by the first dermatologist. Elidel is an immunomodulator. It modulates the immure response as is applied locally to vitiligo patches on the skin.
From the FDA’s website on Elidel, here are some quotes from the manufacturor of Elidel:
“The mechanism of action of pimecrolimus (Elidel) in atopic dermatitis is not known.”
So on this point, the scientific community doesn’t really understand the pharmacology of the drug, but they understand some of the effects of applying the drug.
WARNING
Long-term Safety of Topical Calcineurin Inhibitors Has Not Been Established
Although a causal relationship has not been established, rare cases of malignancy (e.g., skin and lymphoma) have been reported in patients treated with topical calcineurin inhibitors, including ELIDEL Cream.
Therefore:
Continuous long-term use of topical calcineurin inhibitors, including ELIDEL Cream, in any age group should be avoided, and application limited to areas of involvement with atopic dermatitis.
ELIDEL Cream is not indicated for use in children less than 2 years of age.
…ELIDEL Cream should not be used in immunocompromised adults and children
…The safety of ELIDEL Cream has not been established beyond one year of non-continuous use.
What is the most important information a patient should know about ELIDEL Cream?
The safety of using ELIDEL Cream for a long period of time is not known. A very small number of people who have used ELIDEL Cream have had cancer (for example, skin or lymphoma). However, a link with ELIDEL Cream use has not been shown.
Because of this concern:
A patient should not use ELIDEL Cream continuously for a long time.
ELIDEL Cream should be used only on areas of skin that have eczema.
ELIDEL Cream is not for use on a child under 2 years old.
So, long term safety is not known. Some cases of cancers, both skin and lymphoma, have been reported.
The conclusion of the FDA is that: long term use “should be avoided…”
So the second dermatologist laid this out for me. Further he noted that the FDA mandated that Elidel specifically be labeled with a “Black Box” warning because of these concerns about increased cancer risk.
He explained that all of the medical treatments for vitiligo he knew of increased the risk of cancer.
So what did he recommend? Well, it’s pretty simple. He recommended I go to a drug store and buy self-tanning creams. This was something one of his prior patients had been doing for vitiligo and he now passes that along.
So I left that doctors office elated. I didn’t need to spend any more time in the lightbox. I didn’t need the drugs. I needed to go to the store and find the right tanner. I was informed. Everything that doctor told me I could look up online and verify from the manufacturer’s materials posted on government websites.
I stopped the standard medical treatments for 3 reasons:
- the vitiligo treatments took too much time and money
- the vitiligo treatments don’t and can’t ever cure the autoimmune condition that is manifesting as vitiligo
- the vitiligo treatments increased my risk of developing cancer, and skin cancer specifically.
What’s more, members of my family on my mother’s side have gotten cancer, so a genetic predisposition for cancer is potentially in my genetic inheritance.
Additionally, according to the American Cancer Society, my chance of getting cancer as an American male is about 40 percent. Not good odds if you ask me, so I didn’t want to make them worse through temporary half-measures against vitiligo that cost too much and took too much time out of my work week.
I was faced with confronting the prospect of having vitiligo, watching it spread over my skin for the rest of my life. This was an emotional challenge that I learned to deal with over time.
It’s was incredibly difficult to walk away from the idea that medical doctors could help me overcome autoimmune and vitiligo with a reasonable investment of time and money without potentially deadly side-effects like cancer.
I felt alone, abandoned, and almost helpless on this issue. How would I deal with vitiligo? I determined to become mentally and emotionally stronger. And I became stronger on a personal level by confronting my fears, my dreams and the reality of my skin condition. Vitiligo has a strange way of limiting our beliefs, of squeezing our dreams. I hear this from so many people. Vitiligo can make our lives smaller and darker.
A couple of years after leaving standard medical treatments for vitiligo behind, my vitiligo got worse. I stopped covering it up because I didn’t care what people thought or felt. I realized most people didn’t think or care about my vitiligo at all. Most didn’t notice. And important people that did notice were only concerned for my well-being and then forgot about it. Vitiligo wasn’t a problem for me emotionally.
But it bothered me medically. I wanted to have a measure of control over my own physical health and well-being. I didn’t want to get rid of vitiligo, but I did want to be the healthiest person I could and perhaps that would help me reverse vitiligo, and reverse autoimmune.
So I started reading, I started asking questions and I started doing things differently.
- I learned that each person’s body is different and unique. There is no one size fits all solution to managing a disease like vitiligo, managing stress, and being focused on the things that matter most.
- I learned how to care for myself in the most important ways for me.
- I learned how to serve myself and my body so that I could achieve my dreams.
- I learned that having a dream bigger than getting vitiligo to go away was critical.
- I learned that being of service to others with emotionally challenged responses to vitiligo was very important to me.
- I started writing about my journey, my choices, my experiences in an effort to connect with others, to support them and to be supported. That’s why I started this website.
- I wanted to chronicle my path to dealing with vitiligo in the healthiest way possible.
What I have now is something unique to me:
- a dream to be of service to myself and others that struggle with vitiligo by telling the truth about vitiligo
- my vitiligo is going away
- I am focused on living my life and spending my time building a life I love with work and play that is meaningful, I’m not focused on getting rid of vitiligo
- I’ve learned that vitiligo is a blessing and when I embraced the challenge vitiligo posed, I became stronger, more resilient and ready for more challenges.
- So the key question is what will it take to make vitiligo do away for you?
There are three approaches:
The Standard Medical Approach:
- dermatologists
- light boxes
- lasers
- pharmaceuticals, etc
- no cure
- side-effects of treatments
- out of pocket costs
The Rise Above Approach:
- become emotionally stronger than you are now
- grow your self to the point where having vitiligo is not a challenge anymore but simply another aspect of you
Be The Best and Healthiest Approach:
- a life lived to the max where health, life, and dreams are aligned in such a way that your body is healing itself,
- no hiding
- every day your life becomes more and more of what you desire for you and those around you.
- you become a pillar of health and dignity for your friends and family. You are the strong one that people rely on
- People go to you when they need someone to talk to when they need encouragement
- You are the person that people ask, how did you do it? What did you change? How can I do that?
- People look at you and see you, not your vitiligo.
- People see you for your potential.
- People won’t avoid you.
- You build a network of people that are like-minded, that want health, life, and purpose aligned.
Vitiligo can be treated by medical intervention, by becoming emotionally stronger or by becoming the very best version of yourself.
I am committed to helping motivated people that want to be the healthiest people possible. People that want the best for themselves and their families, that will do the work, that will dedicate themselves to giving themselves what they need to live the life they want, making vitiligo a mere side-note. When people tell the story of your life, they will talk about your work, your connections in the community, your service will be your legacy. Your legacy isn’t about vitiligo and shouldn’t be.
I don’t know what the right path is for you, but I can tell you more about how you can have a body that heals itself, a life that supports your dreams and a life that inspires those around you.
That is what I talk about with my friend Ryan in “THE 5 STEPS TO STOP HIDING AND START HEALING VITILIGO” workshop.
Does vitiligo go away? Yes. You can get vitiligo out of your head and heal your body.