Nathalie talks with a stranger at a cafe, Elizabeth, about what looks like vitiligo white patches on her arms and forehead, but is actually a condition she was born with. Elizabeth grew up in a family that called her white patches “birthmarks”, and 1 out of every 3 family members have the birthmarks, as well…what’s more, she’s been told that as far back as they’ve been able to trace their genealogy these ‘birthmarks’ are found. This week Elizabeth visited a new doctor for an unrelated health issue and was told that her white patches are actually not birthmarks…Elizabeth explains more in this conversation.
Years ago I came across this story about a family who changed their lifestyle in an effort to help their daughter who had vitiligo. It worked!
As I went back to reference the site to answer a question emailed to me, it was gone; however, through the magic of the internet and the wayback machine, I was able to retrieve a full copy…all 93 pages!
We talk a lot about vitamins, diet changes, and different techniques to heal vitiligo and repigment our skin, so I thought it’d be a great idea to reprint their whole story here.
By Eric Fricker
A low technology approach to vitiligo, published on the information super highway.
First Revision, Copyright © 1997 by Eric Fricker
Second Revision, Copyright © June 1998 by Eric Fricker
About This Book
This book is the story of my daughter’s skin disease and how it changed the lives of our family. We have witnessed and recorded her tremendous recovery, centered around nutritional changes. Since vitiligo is seen in only one percent of the population, there is not much information available on the disease. This book has been helpful to many people with vitiligo as well as parents of children with vitiligo.
This book is dedicated to my wife Susan and our children Kyle, Emily and Katie, as well as the many people suffering from vitiligo.
One of my favorite things to do, when I have the time, is to put together a jigsaw puzzle. A jigsaw puzzle comes with a picture, the way it should look after it has been put together. We knew how Emily’s skin should look, and this is a story of how we helped her put the pieces together.
I thought we might start working our vitiligo puzzle out by visiting our pediatrician. Our son had been climbing trees earlier and had some funny looking spots on him. The pediatrician told us that they would just fade away and they did. So we thought the same would happen for Emily. We were in for the shock of our lives. We were given a brochure explaining vitiligo, a skin disease that turns your skin milk-white in patches.
The goal of this book is to present a method that an average person can follow to achieve permanent results. These results do not apply just to vitiligo, they affect all aspects of your health. This includes everything from your cholesterol level to high blood sugar, as well as pigment. Most of the things we did to treat Emily’s vitiligo are things we should all do to support health and support the body’s ability to heal itself.
This book deals with trying to repigment the vitiligo plaques to match the original skin pigment. Others have been successful in depigmenting the remainder of their skin to match the vitiligo plaques. Still others have successfully used camouflage to cover the vitiligo plaques. All of these are valid options and are discussed regularly on the Vitiligo Support and Information Group (VSIG). Many people we have talked to, have had success with homeopathic doctors. I don’t have any experience with them, but before we made any progress I was considering it. We viewed each of these as potential options, that if we were not successful in repigmenting, we would consider them more closely.
In fact, we did visit a local acupuncturist at one point. He said Emily’s vitiligo was too far along for him to help her. He was very negative and right in front of Emily he told my wife that she would never get better. I would love to show him her progress now. It is sad to think that health care providers can be so callous. That negative attitude could easily have taken the wind out of our sails. I am lucky to be an eternal optimist and we persisted. Health care providers should mention to their patients that although they may have nothing to offer, there are other treatment approaches that they don’t know anything about, allopathy, homeopathy, naturopathy, mind body counseling, stress management techniques, ayurveda. Never take away the patient’s hope and say they will have to live with it. Say, “I don’t have anything to offer but there may be other choices available down the street”.
We did not get much help from the local medical doctors. I got the feeling that they wanted to work with someone that had a disease they knew more about. When I started asking questions they started getting “short” with me. How could I question the MD? I apologize to caring doctors reading this out there, this is just my experience with a few local doctors. Vitiligo is not something you can handle in a fifteen minute office visit, the initial visit should take at least an hour, with lots of questions, answers and some hand holding. I know there are caring doctors out there. They are just so hard to find when you first get this disease. My suggestion is to read as much as you can, because you must be more knowledgeable about this disease than the doctors you talk to. That is the only way you will be able to judge the treatments they offer. After reading this story you will see the lengths that a father will go to, when the medical community tells you there is nothing that can be done.
I am not a doctor, so consult your physician before attempting any self-treatment. Be warned that you will probably know more about vitiligo than your family doctor after reading this book and spending a few days on the Internet. Discuss the ideas that you read about with your doctor. With an open mind and some perseverance you will succeed in repigmenting.
It’s time to take the shrink-wrap off of the puzzle and get to work.
Our Search for Information
Every year for Christmas someone gives me a jigsaw, it’s almost a family tradition. It is the only time of year that I have time to work it. When we started working with Emily and her vitiligo I envisioned it as a large jigsaw.
We Needed Information
Vitiligo was not and still is not a household word. The Internet was still young. I had a hard time finding any information about vitiligo. Learning about the National Vitiligo Foundation Inc. gave us some relief. It was probably the best thing that came from our visits to the dermatologists. We had so many questions, we found that sending mail was too slow and cumbersome, phone calls were expensive. The Internet was where we found fast answers and some comfort.
I would get a daily message with every usage of the word vitiligo. I got lots of junk. People talking about Michael Jackson, questioning whether he really had vitiligo. I have since talked to a member of VSIG who said he met Michael, the Jackson’s performed at his high school dance, where they compared their vitiligo. Other people would talk about pets that have vitiligo.
Back to my story. Out of the junk, I would find a name or two of people concerned with vitiligo. I would send notes to these people. Asking for help. Many thought a mailing list would be a great idea, but none knew how to go about it. This is how I met John Petrik. John had a positive attitude and he really fueled my fire.
Then I heard about National Public Telecomputing Network (NPTN). Kind of like Public Radio, but with an Internet twist. They offered free Internet access to people in cities all over the US. I contacted them and finally someone said yes, they could set me up. It took what seemed to be forever, over a month of negotiating with different people.
In the process, I was put in contact with Dr. Bob Zenhausern at St. John’s University in New York City. He was able to set us up immediately. He also had better software than NPTN so I jumped on the opportunity. Dr. Bob and the system administrator at St. John’s (Paul ‘Kary’ Karagianis) have been tremendous. They have since set me up with three other listservs. They also allowed John Petrik to create a sister list to VSIG, which is the VSIG-Lab (doctors and health care professionals only).
I guess I felt that all this work would help me, eventually. I had the need to talk to others about vitiligo. The more people I talked to the better my chances of finding a cure. One thing was sure, I couldn’t talk to my wife about it. She would just clam up, she couldn’t face it. Just ignore it and it will go away. I am sure I didn’t make it easy for her to talk about, I was very frustrated, frustrated with the disease and with not being able to talk to her about it. It wasn’t healthy for either of us and it wasn’t helping Emily either. I occasionally had difficulty talking about it, but sending email about it was easier for me.
It seemed easier to talk to strangers, thousands of miles away, than to friends. It is a very emotional disease. Have you noticed that when you meet someone with vitiligo, you tend not to talk about it. At least that was the case with me. It is easier for me to talk to people I meet about their vitiligo now. I have stepped out of my comfort zone so many times now that talking about it is almost second nature. I start by saying, “My daughter has vitiligo, is that what you have?” or “You know my daughter has white spots on her skin, just like yours.”. So far I have not had a negative response and I find most people would like to talk about it.
Let’s dump the box out onto a large table and start working the jigsaw.
I would be the first to raise my hand if we were asked collectively, “Who tries to cover their vitiligo?”. Primarily, I cover my vitiligo because I prefer not to look at it, and secondarily, for it to be less noticeable to others; however, I am not ashamed to have vitiligo. That said, I don’t walk around like a proud peacock fluffing my white feathers for all to see, either. Rather, it is just a part of me and if someone happens to notice it, they notice it.
What if I thought I had an unusually large nose, or lips that were too thin, or that my forehead was too large for my face, and I caught someone looking at that? Would I be ashamed? No. I’d probably feel a bit of a sting to my ego, but I’d go on without a second thought. Well, any one of those attributes could be viewed almost the same as vitiligo; they contribute to the sum of me.
Here’s how it differs: no one is going to come up and ask me, “Why is your nose so big?”, but they will ask why my skin is “like that”. Ugh, do I pull the shirt sleeve down to cover my hand or do I stand tall and answer? Only one of those answers will make you happy with yourself.
One of the most liberating experiences happened to me about four years ago. Until that day, I hadn’t really ever been confronted about my vitiligo, nor had I ever felt a greater need to educate.
I was at a relative’s home for Mother’s Day and as began setting the table, my 4 year old step-niece (my step-father’s daughter’s daughter- that’s a mouthful, lol) walked up to me, pointed at the white patch on my hand and said in a sweet and curious tone, “What’s that?” Instantly, and seemingly from out of nowhere, her father chimed in, “Honey, we don’t ask those kind of questions?”
His was a simple sentence, but the inference was damaging. It made me feel as though he thought something was ‘wrong’ with me; moreover, something so terribly wrong that it shouldn’t even be discussed above a whisper. Worse yet, I felt he was teaching his daughter to fear those who may look different from her. Not only did I want to lovingly tell his daughter about vitiligo, I wanted him to sit there and learn about it, too. And maybe I wanted to give him a little lesson in tact…just a little one 😉
Undisturbed, I said, “It’s okay. I’d love to talk about it.” I sat down on a chair next to her and held out my hand. “You see these white patches? You can touch it if you want to. (she put her tiny finger right in the middle of my hand) It’s where the coloring in my skin went away for a little while, and sometimes it comes back, and then goes away again. It’s kind of like freckles, but it’s white instead of brown.” Her reaction was priceless. “Oh, okay.” she said nonchalantly. One of the other children caught her attention so she went off to play, and her father thanked me.
We have to seize opportunities to lift our self-esteem. I could have just let him walk away scolding his daughter for asking me about vitiligo, but by asserting myself, I took control of that moment; I taught a little girl about vitiligo, and I made it damn clear to myself and her father that is vitiligo is nothing to be ashamed of. Now that is liberating. You should try it sometime.
We all anxiously await the cure for vitiligo, but in the meantime let’s be aware of the full ramifications of the products we use to deal with vitiligo; after all, our skin may be riddled with white patches, but at least we are healthy.
Tonight I came across a very interesting article about a product sold online which is used to whiten the skin so the vitiligo white patches are no longer obvious. Sounds like a promising alternative, but it comes with potentially deadly side-effects. And while it is true that almost all medicines come with an absurdly long list of side-effects, most times the risk out-weighs the benefit of saving your life.
Living with vitiligo is very difficult emotionally, but I don’t think we should risk our lives to feel ‘normal’…there is just too much to live for.
Read this story and tell me if you would use this product despite the side-effects.
UAE women desperate to be fairer using deadly vitiligo injection
An increasing number of women in the UAE are turning to drugs used to treat vitiligo patients, to whiten their complexion and get fairer skin.
Health experts have warned that the misuse of such drugs can cause of serious diseases like cancer.
These girls are so desperate to become ‘white’ that they go to the extent of taking “the eldoquin injections used to treat vitiligo”, according to one doctor who receives several requests to provide the treatment.
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.
Speaking to Emirates 24|7, Dr Ghada Abu Elhosn, a dermatologist at Al Buhaira Medical Center in Sharjah said that these injections are being sold illegally in the private sector in the country.
“Doctors purchase these injections from other countries such as the US. They are very expensive. One dose of it can cost around Dh5,000. And in order for a normal girl to get the desired result, she has to take a number of injections. However, most girls who want to change their skin colour do not care about the cost. They are ready to pay any amount to get the desired results.”
Dr Ghada added that eldoquin injections kills the melanin cells in the skin, thus, it transforms the skin color to white.
“These injection are mainly used to treat vitiligo patients who get the disease and whose skin transforms by 75 per cent to white color. However, if the white in skin was less than 75 per cent, then we don’t give the patients these injections, and instead of it, we try to treat the affected areas. In most of the cases, they patients get treated.”
She pointed out that she receives many girls who come seeking to get this injection. “However, we do not give it to them because it can cause serious diseases such as cancer, liver problems, lack of immunity and many more. It is not worth it.”
According to another dermatologist from Al Tawam Hospital, these injections are not available in the private sector.
“Government hospitals mainly have such injections. Even here, we do not give it easily to anybody who wants it. I know that the girls who want such injections must sign on an overtaking and they take the responsibilities for any future illness or health problem which may be caused by taking it. We never give it to a normal and healthy person. We only give it to vitiligo patients.”
Emirates 24|7 spoke to a number of women who were desperately seeking the injection.
Aisha, a 35-year-old national mother of two said that she has been trying to get this injection for many years.
“I am not fair. My husband is fairer than me. I tried many whitening creams and tonics, but the results are not satisfying. Once I stop using them, I go back to my natural color. This is annoying as everybody see my husband more handsome and with better skin color.”
She added that she tried to get this injection from many private hospitals, but failed to get it.
“They refuse to give it to me. The doctors say it is not good to be given to a normal person. For me, it doesn’t make a difference as the risks are not 100 per cent. They say that these problems may happen. I have two kids, and I am not planning to have more children.”
She added that she is willing to pay high costs to get the injection, even if it costs Dh5000 per injection.
“My husband also encouraged me to get the injection. He says he wants to see me more beautiful.”
It’s day 9 of the new year and over the past week I have been bombarded with that age old question, “what’s your new year’s resolution?”, and I have been inundated, online, with unsolicited advice on how to fulfill some of the more common resolutions. So once again, I got out my notebook (somehow this old-fashioned method just seems more official.) to make the list. As I flipped the pages to find a blank sheet, I came across my list for 2010 and glanced through them. Ugh, about three-quarters of the items were not accomplished, and worse, they were at the forefront of what I wanted to get done this year.
“The definition of insanity: doing the same things over and over but expecting different results.” Albert Einstein
This time of year can be conducive to a couple of things, 1) micro-examining your life and 2) feeling depressed about certain aspects of your life. Every year it’s the same cycle: of making resolutions, breaking them, chastising yourself for not following through, forgetting about them, and then bringing them up again at the year end. Einstein may have been on to something; it is insane.
After reading my list for 2010 I was a bit perplexed as to how I was going to achieve my goals, but I was excited when I finally came across an idea that will break the cycle: choosing 3 words that will be my guiding pillars for the year.
I am a techie nerd and a social media addict, so I am constantly exposed to ideas from people who are leaders in their industry. One of my favorites is Chris Brogan. His words have inspired much of what I do to enhance our site, and yesterday his post titled, “My 3 Words for 2011”, opened my eyes to a viable way to actually make the changes I want to see in my life.
As you read Chris’s post, I want you to think about the positive changes that you can make in how you deal with living with vitiligo.
The post below is re-printed with permission from Chris Brogan.
Every year, I come up with three words that will be my guiding pillars for what I will focus on in the coming year. Instead of resolutions, which don’t usually help me very much, I work hard on using these words as a lighthouse for my actions and efforts. Here are my 3 words for 2011:
Reinvest. Package. Flow.
Reinvest – I will reinvest in my efforts in all areas of life that matter to me. I won’t phone it in. I have some fitness goals. I can’t keep playing at it. I have some financial goals that will be met. I have community goals that require me to reinvest in my projects and not take on new things.
Package – I just wrote about packaging the other day. Essentially, I’m going to get my own marketing house in order. I’m going to make sure things make sense, make sure they are easy to understand, and make sure that the right people know about them. Packaging will have other meanings, too, but this one is important to me in 2011.
Flow – In the last few months of 2010, I came to realize that I’m still doing too much. I went into redrawing mode yet again. One thing I have to do much better in 2011 is manage flow: that state of working on the most important stuff and eliminating distractions. I’ve cut a lot out of my original plans for 2011. I’ll surely cut a little more. The end result? Things will come out much better. I’ll have less stress. Things will flow nicely.
3 Words Aren’t Goals
The three words idea is built so that you can have something to reflect upon. As you know, goals should be SMART ( Specific, Measurable, Achievable, Realistic and Timely). The way you use the two together is that you think up goals that will match up to your words. For instance, one goal of mine in 2011 that ties to “reinvest” is to lose 50 pounds over 10 months. 5 pounds a month is specific, measurable, achievable, realistic, and timely.
There you go.
What are your three words for 2011? How will you guide your actions?
My 3 words are: action, focus, simplify