Vitiligo

 

 

What is vitiligo

Vitiligo or leukoderma is a chronic skin condition that causes loss of pigment, resulting in irregular pale patches of skin.

The precise cause of vitiligo is complex and not fully understood. There is some evidence suggesting it is caused by a combination of auto-immune, genetic, and environmental factors.

The diagnosis of vitiligo is made based on a physical examination, medical history, and laboratory tests. If the doctor take a small sample (biopsy) of the affected skin to examine under a microscope, the skin sample will usually show a complete absence of pigment-producing melanocytes.

Vitiligo can have a significant effect on the psychological well being of the patient. This is especially true for darker skinned patients as the contrast between pigmented and depigmented skin can be quite drastic. Vitiligo is not contagious. It is not life-threatening. But, vitiligo can be life-altering. Some people develop low self-esteem, no longer want to hang out with friends or develop serious depression.

In some cultures there is a stigma attached to having vitiligo. Those affected with the condition are sometimes thought to be evil or diseased and are sometimes shunned by others in the community. People with vitiligo may feel depressed because of this stigma or because their appearance has changed dramatically. Other people with vitiligo experience no negative psychological effects at all.

 

 

“We saw it comin’ on him … at [an] early age. You know, just a little spot. My aunt had the same thing.”

Joe Jackson, Michael´s father

 

 

"It was obvious that Michael’s skin grew more pale during the mid 1980’s. The media, in their frenzy to print anything Michael, without any proof, stated that Michael bleached his skin and changed his features to appear European. Though there was no proof of this, the public, by now becoming more and more immune to the blurring lines of journalistic integrity, swallowed this lie whole, without question."

“It is well documented that in 1986, Michael was diagnosed with Vitiligo and Lupus. Vitiligo is a chronic disorder that causes depigmentation of patches of skin. It occurs when melanocytes, the cells responsible for skin pigmentation, die or are unable to function. The cause of vitiligo is unknown, but research suggests that is may arise from autoimmune, genetic, oxidative stress, neural, or viral causes.”

 
Dr. Patrick Treacy, who treated Michael Jackson while in Ireland in 2007

 

 

"The truth is that Michael noticed a small white patch on his stomach around 1982, just as I had found a spot on one thigh. Where mine didn’t worsen, his spread. I had suspected something was going on as early as 1984 and Victory, because he started to cover up all the time."

Jermaine Jackson

 

"Back in 1993 nobody knew anything vitiligo. He kept getting whiter and whiter and whiter, and nobody understood why. Anybody who knew Michael Jackson will tell you that when you are up close to him—he had absolutely no pigmentation in his skin—you are looking at his veins when you look at his hand. You are seeing through to the blue veins, and they're very, very apparent. At first that's a starling thing. Nobody ever talks about that, but it takes you aback at first. You're looking at a person who is almost translucent."

Oprah Winfrey

 

 
 
 
During court depositions in 1994, both Jackson’s dermatologist Dr. Arnold Klein and his nurse (Deborah Rowe, who Jackson later married) revealed that following a biopsy of his scalp in 1983, Jackson was diagnosed with lupus and vitiligo.

Videos of interview: youtu.be/2foESMQDBAY,youtu.be/8pOVUXVYlpY, youtu.be/VRpJoDiYniE

 
 

LARRY KING: What is vitiligo?

DR. ARNOLD KLEIN, Michael´s dermatologist: It’s a loss of pigment cells. And the pigment cells, you — for every 36 normal cells in your body, you have one pigment cell pumping pigment into them. Unfortunately, it’s an autoimmune disease and lupus is an autoimmune disease. And they tend to go together, because you make antibodies against your pigment cells.

KING: Did Michael have it?

KLEIN: Absolutely. We biopsied (INAUDIBLE).

KING: What causes it?

KLEIN: It’s caused by your immune system and your immune system destroying your pigment cells.

KING: Do black people have it more than white people?

KLEIN: No. But it’s just more visible on black people, because they have a dark skin. The other thing is, it certainly occurs with a family history. And I believe one of Michael’s relatives did, in fact, have vitiligo.

KING: How bad was his?

KLEIN: Oh, his was bad because he began to get a totally speckled look over his body. And he could…

KING: All over his body?

KLEIN: All over his body, but on his face significantly; on his hands, which were very difficult to treat.

KING: So let’s clear up something. He was not someone desirous of being white?

 

KLEIN: No. Michael was black. He was very proud of his black heritage. He changed the world for black people. We now have a black president.

KING: So how do you treat vitiligo?

KLEIN: Well, I mean there’s certain treatments. You have one choice where you can use certain drugs called (INAUDIBLE) and ultraviolet light treatments to try to make the white spots turn dark or — his became so severe, that the easier way is to use certain creams that will make the dark spots turn light so you can even out the pigments totally.

KING: So your decision there was he would go light?

KLEIN: Well, yes, that’s ultimately what the decision had to be, because there was too much vitiligo to deal with and…

KING: Otherwise, he would have looked ridiculous?

KLEIN: Well, you can’t — he would have to wear heavy, heavy makeup on stage, which would be ridiculous. And he couldn’t really go out in public without looking terribly peculiar.

KING: [...] How did you treat the vitiligo?

KLEIN: Well, we basically used creams that would even out the same color and we destroyed the remaining pigment cells.

KING: And did his color change a lot over the years?

KLEIN: No, because once we got — we got it more uniform, it remained stable. But you still had to treat it because once in a while — and he had to also be extraordinary careful with sun exposure because of a lot of things. And that’s why he had the umbrellas all the time (INAUDIBLE) skin now.

KING: So when you have vitiligo, you have it all your life?

KLEIN: Usually. Almost uniformly. You don’t just have a little bit of it. And it’s most disconcerting not in white people, but in black people because you begin to look like a leopard.

KING: You can see it. Yes. Did he have blotches?

KLEIN: He had blotches but we evened out almost all of them. And he was very, very devoted to treating it. I mean he wanted to look well. He wanted to look well for one group of people, his fans. He wanted to embrace and love his fans more than any performer I’ve ever know.

 

 
 

“It started happening relatively early, he even was trying to hide it from me.. he tried to hide it for quite awhile. He’d always try to cover it with makeup and even out his skin tone until it got so extensive. It’s all over his body. We were always trying to hide it and cover it for the longest time until he just had to tell Oprah and tell the world, ‘Listen I’m not trying to be white, I have a skin disease.’ In the beginning I tried to cover the light spots to match the darker part of his skin, but then it became so extensive that we had to go with the lighter part of his skin because his whole body was reacting…he’d have to be in complete full body makeup, every inch of his body. So it was easier to make the transition to him being to the lighter shade that he is.”

Karen Faye, Michael´s long-time make up artist and friend

 

Dark make-up stains on MJ´s iconic glove and on his shirt during a show:

 

 

Question: I have always wondered why he didn't use sunblock? He always use umbrellas but did he try sunblock? Or was it too harsh? Or maybe he did have it and it wasn't enough? He couldn't run around in the sun anymore like he used to, it's hard to run/swim etc with an umbrella.

Karen Faye: We ALWAYS used the highest sunblock when he had to be in the sun! Shooting IN THE CLOSET was extremely difficult covering his vitiligo over the heavy layer of sunscreen, sweat and going sleeveless (and white wardrobe for him and Naomi). LOTS of touch ups. (photo below)

twitter.com/wingheart/status/1286036603060641792

 

"When you understand how sensitive he was about his condition, you also understand how much he trusted Karen. It was invasive work but every professional choice she made was designed to give him freedom and confidence, and make him look like the star he was. And he equally relied on her keeping all her work confidential. Some members of his entourage, video directors and photographers, didn’t understand that Karen’s challenge was to keep Michael looking perfect, and she couldn’t explain her actions because she was sworn to secrecy. So observers only saw an overly fussy makeup lady—one who sometimes inexplicably disappeared with her client. This was misconstrued: people decided she was competing as a woman for his attention. The truth was that she was working her butt off to keep him feeling safe and secure, ensuring none of his vitiligo was visible to anyone crowding near him."

Jermaine Jackson

 

Michael: Okay, but number one, this is the situation. I have a skin disorder that destroys the pigmentation of the skin, it’s something that I cannot help. Okay. But when people make up stories that I don’t want to be who I am, it hurts me.

Oprah: So it is…

Michael: It's a problem for me. I can't control it. But what about all the millions of people who sit in the sun to become darker, to become other than what they are. Nobody says nothing about that.

Oprah: So when did this start, when did your … when did the color of your skin start to change?

Michael: Oh boy, I don’t … sometime after Thriller, around Off the Wall, Thriller, around sometime then.

Oprah: But what did you think?

Michael: It’s in my family, my father said it’s on his side. I can’t control it, I don’t understand, I mean, it makes me very sad. I don’t want to go into my medical history because that is private, but that’s the situation here.

Oprah: So okay, I just want to get this straight, you are not taking anything to change the color of your skin …

Michael: Oh, God no, we tried to control it and using make-up evens it out because it makes blotches on my skin, I have to even out my skin. But you know what’s funny, why is that so important? That’s not important to me. I’m a great fan of art, I love Michelangelo, if I had the chance to talk to him or read about him I would want to know what inspired him to become who he is, the anatomy of his craftsmanship, not about who he went out with last night … what’ wrong with … I mean that’s what is important to me.

1993 interview

 

 

 

"Then of course, I noticed, because he didn't have any makeup on, I noticed the Vitiligo.  It was on the right hand side of his face and down his neck and also on the back of his hand.  I don't remember which one.  I don't know how far it went up his arm because he had a long sleeve shirt on, but I noticed the Vitiligo and as time went on, the Vitiligo spread and spread and spread and it was difficult for him when he had to appear in public or perform, to get the right kind of makeup, because...that skin was white, not like Caucasian white.  It was white like a refrigerator, snow white.  In the beginning, he did use darker makeup to cover that, but then as it spread, it got more and more difficult to make that white skin the color of the rest of his skin, so he would have to go to lighter and lighter and lighter makeup. "
 

Of course the press got on him about that, about trying to be white.  Which is the farthest thing from the truth.  Michael never wanted to be white.  He was proud of who he was and where he came from, but he had no choice.  He one thing he never ever did, he never complained about it.  He had every right to."

 
David Nordahl, artist and Michael´s friend (www.reflectionsonthedance.com/interviewwithdavidnordahl.html)

 

 

Vitiligo treatment

 

Though there is still no cure for vitiligo at this time, researchers are closing in on blocking the immune response that results in pigment loss. In the meantime there are viable treatments being used. 

- Several different topical (applied to the skin) medicines can repigment the small areas skin. The most commonly prescribed medicine is a potent or super-potent topical corticosteroid. About half, 45 percent, of patients regain at least some skin color after 4 to 6 months. These medicines have possible side effects, so patients must be carefully monitored. A possible serious side effect of using of a topical corticosteroid for a year or longer is skin atrophy. This means the skin becomes paper thin, very dry and fragile.

- Light treatment uses light to repigment the skin. Works best on the face; least effective on hands and feet. This treatment is effective for many patients, but results can disappear. About half, 44 percent, see results disappear within 1 year of stopping treatment. After 4 years, about 86 percent lose some color restored by treatment.

- Puva light therapy uses UVA light and a medicine called psoralen to restore skin color. Requiring treatment at a hospital or PUVA center is twice a week for about 1 year.

- Surgery may be an option when light therapy and medicines applied to the skin do not work. Usually removing unaffected skin or skin cells and placing where need pigment. It is for adults whose vitiligo has been stable (not changed) for at least 6 months.

- Depigmentation (this is the one that Michael Jackson had to endure) is used when there is affected more that 50% of body and other treatmed has not worked. It removes the remaining pigment from the skin by applying a cream once or twice day from one to four years. This cream gradually removes color from the skin and leaves a person with completely white skin, which is extremely sensitive to the sun.

 

 

“His face is white because he has had this disease, and instead of having it spotted like a cow or something like that he just decided to just do the whole thing, because he could afford to do it.”

Kathrine Jackson, Michael´s mother

 

 

“The vitiligo is a real problem for Michael, and has been for years. It has affected him in many emotional ways, and has forced him to use a lot of make up and over cover ups. The horror of waking up every day with these spots made him miserable.

“Prior to this, Mike was upset because he had blemished. When they were finally gone because he was coming out of adolescence, then the vitiligo struck. It was if he could not win. All of this has just served to make him more insecure. It is very difficult to be a public person and have to deal with these kind of private tortures.”

Gino Brando

 

 

"Here you go: I’ve worked with Michael Jackson in his studio on and off for over 17 years – that covers most of the time that everyone seems to be fixating upon.Michael has vitiligo. I’ve seen it with my own eyes, along with the unhappiness it has caused him both privately and publicly. Many great artists are reserved off stage, but for Michael this was compounded by the media and public obsession over his appearance. He covered much of this up with make-up – and for many years hid behind a screen of uncomfortable and impractical panstick.

He’s tried to learn to be accepting that people don’t believe the transformation he’s made over the years, but all this ridiculous argument over it makes it incredibly hard for him. I see him a couple of times a year, usually just for a day or so, and even now, all the speculation and prying offends and upsets him. He is one of the most loving, kind and gentle souls I’ve ever met, and has possibly the most stoic and forgiving nature in the light of such awful injustice, slander and bigotry. He’s not without faults, and has to be one of the most exacting professionals I’ll ever have the fortune to work with. Most of the time, he ignores what people say, and in the last few years he’s gone past caring what people think. He isn’t on earth to justify how he looks – but the public seem to assume that he must account for the changes he made to his appearance, including those that he couldn’t control. I can tell you: I’ve been in a pool with him: before he had depigmentation therapy, he was blotchy all over. Now, he’s basically so white that he burns at even slight exposure to the sun. This was a choice he made: makeup or treatment, and having the money, he got the treatment. I don’t blame him – had I this condition, and the funds, I would have done it too.And let me tell you: when you get to know him, he’s a normal, easy-going (out of the studio!) guy, with a great sense of humour and is most definitely a BLACK man.

I posted here because he bet me ages ago that I couldn’t find a single site online that really addressed his skin colour in an even manner. I hope I’ve cleared up some of your questions."

Leroy

 

Question: Why are you wearing a silk mask in your latest appearances?
Michael: Because…uh..with time my skin condition has gotten worse. I hate to say it. I have vitiligo and uh, I am totally completely allergic to the sun. I’m not even suppose to be outside actually, even if I am in the shade the sunrays can destroy my skin.

VH1 interview, 1996

 

 

It was very disturbing to him that people thought he always wanted to be white and he was bleaching his skin. [But] he identified as being a black person and so it was troubling to him that everyone thought that he was a hater of his own race. And the lupus, why he didn’t just come out more clearly and say that was the problem, I’m not sure. But I know it was something that bothered him a lot.

He had a lot of blotches on his skin, huge white patches all over his body. So he would cover up his body and that of course gave food for fodder to the press.

Gotham Chopra

 

Patches on Michael´s body:

                              

Michael´s hand and leg:

 

Arlington, TX (PRWEB Reprinted) July 7, 2009 – Permanent cosmetic pioneer and celebrity permanent makeup artist, Sandi Hammons, and her company, Premier Pigments, the manufacturer of the permanent makeup worn by the late Michael Jackson, are speaking out against widespread assertions that “Michael Jackson didn’t want to be black.”

“That is so far from the truth,” says Hammons. “Anyone making those assertions obviously doesn’t understand the disease Michael suffered from or the 

treatment options available to him.”

“There are even some medical professionals who still consider the disease to be nothing more than a cosmetic nuisance,” said Hammons, “But the truth is, many people diagnosed with the disease suffer greatly. A deep sense of shame and hopelessness (including depression and suicidal thoughts) along with a preoccupation with appearance and available treatments are really not uncommon. Vitiligo is especially traumatic for darker skinned individuals, as the contrast between pigmented and depigmented skin can be quite drastic.” Jackson was widely criticized for his use of bleaching medications and chemical peels. “What people don’t understand is that there are few, if any, treatments that are effective, especially for widespread cases like Michael’s.”             

There are three common types of treatment for vitiligo:

1. Repigmentation as in the case of PUVA and UV lights (Typically ineffective on widespread cases)

2. Micropigmentation (i.e. cosmetic tattooing – recommended on small areas that accept cosmetic pigment) 

3. Depigmentation, as in the case of using bleaching creams to remove smaller pigmented areas (typically recommended for widespread cases similar to Jackson’s).

Vitiligo affects 1% to 2% of the population. It is estimated that over 50 million people suffer from this little known and often misunderstood disease. The precise cause of the disease is complex and not fully understood. There is some evidence suggesting that it is caused by a combination of autoimmune, genetic and environmental factors. “Stress is definitely a contributing factor,” said Hammons. “Changing skin colors add even more stress, particularly if vitiligo develops on visible areas of the body, such as the face, hands, arms, feet, or on the genitals.”

In some cultures there is a stigma attached to having vitiligo. Those affected with the condition are sometimes thought to be evil or diseased and are sometimes shunned by others in the community. People with vitiligo may feel depressed because of this stigma or because their appearance has changed dramatically. Hammons has great compassion for Jackson and his battle with the disease. “To deal with the psychological impact of this disease is significant; to deal with the very public and cruel opinions of others must have been overwhelming." “Trauma drives addiction,” adds Hammons. “In my opinion, those who judged him unknowingly contributed to his preoccupation with appearance, his eventual addiction to cosmetic surgery and prescription drugs, and ultimately his early death. We all need to have more compassion for those who suffer from this baffling and misunderstood disease.”

Sandi Hammons, owner of Premier Pigments, a specialist dermatology make-up brand that Michael used, July 7th 2009 

 

 

Michael trying to hide his face behind his hair:

 

"He was incredibly funny, very interested in science and medicine, and one day he picked up a medical book in my office and opened it to a picture of a black child with black and white skin. He told me: ´I know the pain that that child feels,´ and then he pulled up his pant leg and I saw his skin was black and white. His whole body was." 

Dr. Patrick Treacy

Michael Jackson´s autopsy report:

 

Dear Colleagues:

I can confirm that Michael Jackson had vitiligo and discoid (chronic cutaneous lupus) and never had systemic disease that played any role in his passing.

I am concerned that some commentators are relating that a background of abuse has anything to do with lupus. There has never been a peer reviewed published article that specifically has shown this in lupus.

Thanks

Dan Wallace MD

Clinical Professor of Medicine

Cedars-Sinai Medical Center/David Geffen School of Medicine at UCLA

Lupus expert Dr. Wallace 9th July 2009

 

Vitiligo may be heritable. 

In the Jackson family, it appeared on the side of Michael´s father. Michael´s eldest son Prince has inherited it as well:

 

 

 

“Vitiligo is on my father’s side and Prince has it, too – on his arms and chest.”

La Toya Jackson, Michael´s sister in an interview with new! magazine. 

 

 

 

 

 

 

 

 

 

 

 

World Vitiligo day 

June 25 is World Vitiligo Day

Steve Haragadon, founder of Vitiligo Friends network and Ogo Maduewesi, founder and Executive Director of the Vitiligo Support and Awareness Foundation (VITSAF) developed and finalised World Vitiligo Day. Observed since 2011, this day is dedicated to those living with Vitiligo globally. On 25 June, World Vitiligo Day is meant to spread awareness of this skin disorder and is also a memorial to Michael Jackson who was probably the most famous person to have lived with Vitiligo. June 25, 2009 was the day Michael Jackson died.

Source: vitiligotreatments.com/usa/world-vitiligo-day-2020/

 

 

An example of emotional impact of public assumption and mockery:

MJ and his nephews were watching a movie that had a scene saying Michael became white and that he “did it to himself.” Michael got up and left the theatre. And this was in 1999. 1:31:44 is around where he starts the story https://www.youtube.com/watch?v=e_jxl05JtK0&t=5619s&app=desktop&ab_channel=TheMJCast

Other People With Vitiligo               

 

           

 

White as New Fallen Snow

 

How Vitiligo and Michael Jackson Taught me Compassion

 

I am a 52 year old white woman, and when I say white, I mean white like new fallen snow! I have Vitiligo. Vitiligo is a disease that can compromise your immune system and distort your whole appearance.

The summer before I was getting ready for college, I noticed some strange looking chalky patches that suddenly appeared on my hands. I was an olive skinned girl who never worried about sunburn and who tanned every summer to a golden mocha. Of course in those days of the early seventies we were slathering ourselves with baby oil never giving a thought to sunscreen. It never occurred to me to worry about my skin or the sun or my appearance beyond the occasional pimple and getting the latest fad in fashion and makeup.

I thought the spots were from the French fry grease at the fast food restaurant where I worked that summer to save up money for college. I was sure they were small burns from the fryer and would go away when the burns healed. But at college that fall, I noticed the spots not only had not disappeared, but had grown larger while new ones were forming on my elbows. I knew then that they could no longer be ignored.

I had never even heard of the word: “Vitiligo” but after my doctor visit, I soon became intimate with it as it became a huge feature in my world. An autoimmune disorder, I learned that Vitiligo can be genetically passed down in families but not always. My family has no history of Vitiligo. And it was autoimmune- what a heart-stopping betrayal! Everybody wants to be “comfortable in their own skin” but my own skin was damaging itself and damaging me! How can your own skin turn on you?

I began to read everything I could find on the disease. Vitiligo is an antibody that is in your genes when you are born and for some reason it gets stimulated to start destroying your melanoctyes which are the cells in your skin and hair that produce melanin. Melanin is what gives your skin pigment or color. There is lots of research being explored to discover what triggers Vitiligo and what determines how fast it spreads. It may be environmental factors, stress, physical factors like hormones and blood loss or most likely a combination of all of these. The medical community has established that the antibodies in Vitiligo completely destroy the melanocyte.

That means that my body sees my own cells as something foreign that needs to be attacked, destroyed and removed! There are some treatments that may help restore pigment in some cases but those treatments are not a cure. As of now, there is no cure. The treatments are very time consuming and involve taking a drug that can cause liver damage. I tried a few of these therapies early on when my white spots were not so widespread, but it was not very successful. I decided that I would rather have white spots which were not painful or really hurting me in any way, (other than sunburn, and strange glances and remarks from people) than risk damaging my liver and turning yellow from the resulting jaundice! Did I want to turn white or turn yellow? Were those my only choices? Nursing was my college major and that influenced my decision to forego the drugs because I understood, medically, the reality of the side effects. I later tried the depigmentation therapy on my face to bleach out the remaining dark areas but it did not work very well for me. It affects everyone differently and it takes a lot of diligence and repeated treatments.

The National Vitiligo Foundation (NVF) is a lifesaving resource for people afflicted with this disease. They spearhead the research and search for a cure while providing education and resources for sufferers of this disease. Vitiligo is in the same category as other autoimmune disorders like Lupus, Reynaud’s, Diabetes, and some Thyroid disorders. Most people who acquire an autoimmune disorder develop more than one. I recently discovered that my Thyroid is also involved and I have mild Reynaud’s which is a disorder that affects the circulation in extremities like hands and feet. It makes one’s fingers and toes cold and discolored from poor circulation.

I learned at an NVF conference I attended that because melanocytes are completely destroyed by Vitiligo, there is zero chance of getting Melanoma in the areas that are white. Researchers are looking at a possible treatment for Melanoma using antibodies taken from the blood of people with Vitiligo. The thought is that maybe those melanoctye-destroying antibodies might provide a treatment or cure for cancer is a thought I like to hang onto because it would mean that something good could come out of this disorder.

There are emotional valleys for the person adjusting to the diagnosis of Vitiligo. Over time Vitiligo spreads and is not easy to hide in those stages. My face, hands, arms, and legs became covered with white patches and were a source of embarrassment for me. But the day came when I decided that I was not going to wear long sleeves and pants for the rest of my life! I did need to protect my skin however, because the depigmented skin has no protection from the sun. I found out the hard way how badly burned one can get from the sun if not extra careful. I sometimes think I alone keep the sunscreen industry in business. There are days I wish for a vat to dip myself into to decrease the time it takes to apply sunscreen and protect my skin because it’s necessary if I am going to continue the outdoor activities I love and enjoy. The evening is a better time for me to do things when the sun is not so intense and I forego things scheduled for daytime when the sun is bright. It does require lifestyle adjustments.

I often think how fortunate I was that I didn’t have to deal with this during my junior high and high school years. Being a teenager dealing with all of the hormonal changes, peer pressure and confusion is tough enough without harsh comments about one’s strange and changing appearance. I am sure I would have had to endure cutting remarks regarding my strange appearance. I did need to learn to deal with people staring and making comments especially during the summer months when my pigmented skin was darker in color and I was more exposed wearing summer clothes. I have heard some very bizarre, sometimes funny and occasionally hurtful comments.

I don’t think people intend to be mean but are surprised by someone’s (mine) appearance and don’t think before they speak. I imagine that I did look odd with white spots all over my skin. Children wanted to know if I was “like a leopard” or was I “part zebra?” Adults thought I had been burned and would ask “is it painful” or “is it contagious?” I think I actually liked it better when someone would actually speak to me about their curiosity and ask questions rather than just staring or worse yet snickering or whispering to their friends. Explanations had to be necessarily lengthy and that took up my time when I might have preferred to spend it in some other way.

I will never forget one of the saddest encounters I can remember with a woman who was from India who stopped me one day in a parking lot:

“I noticed the patches on your skin. Do you have Vitiligo?”

“Yes, I do. Are you familiar with it?”

“Yes. My sister who lives in India will never be able to marry because she has Vitiligo. There is a taboo surrounding it in that culture and no man would consider marrying a woman with the disease and whose appearance is marred and undesirable. When it comes to women, India places a lot of emphasis on beauty.”

I could not fathom that attitude nor imagine it to be true. I thought about how lucky I was to have met a man who looked at me and loved me without seeing a “spotted person” but saw a human being. Actually, he was more offended by people staring and snickering at me than I was. I was once stopped in a store by a woman who wanted to know how I had gotten such a bad case of poison ivy. I was baffled by that one until she added that she couldn’t believe how much calamine lotion I had on!

There was one incident where I noticed a lady staring at me which happened all the time, but this time she began following me in the grocery store and when it got a little creepy I turned to face her. She remarked that I “must be an amazing volleyball player to have so many brush burns on my knees and elbows from diving for balls.” I had to bite my tongue so I wouldn’t burst out laughing! I always feel bad for most of the people who make comments because they are so embarrassed when I tell them the facts. The most hurtful encounters are with people who don’t take the time to stop and ask but just stare, point or even laugh. There were times I would actually forget that I did look “odd” until I noticed someone staring or pointing and that would launch me right back into feeling self-conscious and awkward.

I realized too, that I was fortunate to be a white person with Vitiligo. I met several black people with Vitiligo at the NVF conferences I attended and learned how much more devastating it is for them. I was a white person who was turning whiter. They were black people who were becoming white. Not only did they have to deal with the physical changes, but they had to deal with feeling a loss of their race and identity. I cannot speak to this but I can certainly empathize with how much more difficult that must be to lose your ethnic roots, identity or race and to not only question your own identity, but have all that questioned by others.

The Famous Face of Vitilgo

That brings me to the most famous person to have Vitiligo: Michael Jackson. I was a big Michael fan from his early days with the Jackson Five and all through his solo career. He and I were the same age so I grew up on his music and dancing. I remember hearing for the first time the rumors that he was bleaching himself white; I thought that was crazy. I knew personally how difficult it was to try to use depigmentation as a treatment for Vitiligo so I couldn’t imagine how someone could actually bleach their entire body. I asked my dermatologist at one of my yearly visits in the late eighties if she knew anything about Michael Jackson’s skin color and she told me that it was known by most in the dermatology community that he had Vitiligo.

At first I was excited to think that I shared something in common with Michael Jackson. Then as the reality set in, the more I thought about it, the more I realized how horrible it must have been for him. Not only was he a black man, he was probably the most well known person in the world and someone who performed in front of millions of people. It was easy for me to just ignore the stares and go on with my life but how do you do that when you are in the spotlight all the time and subjected to ridicule and tabloid trash talk? I can understand why he tried to cover his Vitiligo up the best he could with makeup and clothes. Michael was known to be a very private person who didn’t want to divulge his medical condition to the world. I have a feeling he may not have received a lot of support from those around him, his professional contacts, and certainly not from the media. And when he did admit to having Vitiligo, so many hateful people in the media refused to believe it using ridicule and writing he “claims to have a skin condition.” Claims to? They accused him of trying to bleach his skin and become a white person. They called him a traitor to his race thinking he had betrayed the African American community of his roots. Who would chose a disease that betrays your own body, challenges your very identity and continually changes your appearance requiring medical treatment and makeup? How does someone who makes their living with their famous face and who faces a debilitating disease deal with that kind of ridicule and mocking from the press?

There were those in both the black and the white communities who turned against him simply because of his changing appearance. Hurtful words can be more painful than a physical attack. Michael endured far too many hateful, hurtful words. Many in the “media” claim that even with Vitiligo Michael would not have naturally turned so completely white. Well, I can verify that it is very possible. My Vitiligo started with me being mostly tan colored with white patches and spots, and gradually progressed to my appearing mostly white with tan spots to now being almost completely white except for a very few tiny tan spots.

Not only is a morphing appearance unavoidable with Vitiligo, but it is inevitable. Now that the antibodies have finished with my skin, they are starting on my hair. I have huge white patches in my hair, eyebrows and eyelashes. It is a cruel joke that the hair on my legs remains as dark as ever which looks even worse against the stark white skin! I can’t throw out that razor yet. And I now get stares and lots of questions about my hair.

Most people actually think I just have beautiful white skin now. I am sure Michael could have experienced a similar evolution of his appearance. He reportedly used the depigmentation therapy to help even out his skin color so he would not have to wear so much makeup. It is all so easy to understand if people were only not so quick to make hateful judgments or believe everything the tabloid media spews about celebrities.

I wish I could have understood better what Michael Jackson went through while he was still with us. I regret not letting Michael know in some way that I understood at least in part what he went through dealing with this disease. I regret not speaking up more then. I have now become a major defender of Michael Jackson promising myself that I will not let hateful words stand! I think too and I sincerely hope, that I have become more accepting of people’s differences because of my own personal struggles with appearance and acceptance. I try really hard to not make judgments about people without learning more about them. Without the challenge of Vitiligo in my life, and my connection to Michael Jackson I might not have that understanding; I might be a different person. Vitiligo and Michael Jackson taught me about compassion.

Source: mjjjusticeproject.wordpress.com/

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Woman with vitiligo talks about her life with this disease and about Michael Jackson:

 

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