April's Vitiligo .. Just for Kids

April is a very special girl who has vitiligo. April's space was created by her, as a place for children all over the world to go and read about other kids with vitiligo, and how they deal with it.

Hi, My name is April. I have had vitiligo since I was 8 months old. I wouldn't know what it was like not to have it. I like my vitiligo, most of the time, because it makes me unique. Sometimes I see pictures in my spots. My right hand is almost all white but the dark spot that's left looks like a person with a big eye and I have what looks like Hawaii on my left hand. I have a picture of an old granny on my right leg and superman on my tummy. The rest of my spots just look like clouds. When I was in Kindergarten I had what looked like a snowman on my lower back. (Right over my backbones) My mom took out her paints and painted on a top hat, a muffler, carrot nose, coal eyes and sticks for arms. It was so cool. I only showed it to my closest friends at school. They liked it.

What happens at the Dermatologist? The Dermatologist won't hurt you. Most are very nice. I should know, I have been to a lot of them. Most of the time all they do is look at your vitiligo to see if they can help you. He or she might say you have to put cream on. Don't worry; it's not the worst thing in the world. In addition to the cream you might need to be out in the sun for a while or you might need to get UVB light treatment. I wasn't sure I would like going in the light box. It was big and had lights all around. It sort of looked like a closet with long light bulbs covering each wall, and the top was open. I went in my underwear and goggles to protect my eyes. I had to close the door. My mom was just outside and she talked to me while I was inside. I was only in it for about a minute. The light goes on and then turns off. When it's off I get to come out and get dressed again. It's really private and no one else sees you. After the first time I realized it was no big deal. Each time you go you stay in the light box for longer. I think I worked up to about 3 minutes. There's only two things, so far that were uncomfortable. You might need to have blood taken. I don't really like that part but I know they have to do it sometimes. It only takes about half a minute and my mom bought me an Icee after both times I had it done. They were checking something called a thyroid and checking to see if my Folic acid and B 12 levels were ok. They were both OK. If your Dermatologist isn't sure that you have vitiligo you may need to have a biopsy. They would take a very small, thin piece of skin, smaller than a pencil eraser is around, and about the depth of a piece of paper. Then they would send it to the lab. I had it taken from the back of my upper thigh. The doctor numbed the area first, so I wouldn't feel it, and then took a quick punch of skin with something that looked sort of like a stapler. I had to have a couple stitches but I was okay. I didn't even cry. I got to show off my first two stitches to my girlfriends at school. But you probably won't even need this. What to do about Teasing? I have been called all sorts of names. Maybe you have heard these too. Cow, Dog, thought you rolled in mud, why did you paint yourself, chocolate and vanilla. (I actually thought that if I were chocolate and vanilla it wouldn't be so bad) I thought they were mean, but I usually just say I have two colors of skin and I was born this way If they are trying to be mean, they probably won't care what you say, but if they just don't understand, it might help them. Most of the time, if kids know more about it they will leave you alone. If anyone makes fun of you they must have something wrong with them. They are trying to make themselves look good by putting other people down. Sometimes people just don't understand what it is, so you can explain it to them, if you want. I feel like if I can explain it, then maybe I am educating them and if they see someone else with vitiligo they won't have to ask about it again. Also maybe they have a family member that has white spots that may have never known what it was. One idea you can try is to make up cards. (Scroll down to PROJECTS and you can download your own cards) I got tired of explaining so I came up with the idea of handing out cards. They have the Vitiligo Support International website on them and I put "I'm just like you, I just have two colors of skin" plus some of the other stuff about not being contagious. I went to Kinko's with my mom and picked out bright colored paper and I printed them and cut them all out. At home I put colorful stickers on the back to make them more "fun". My mom keeps them in her purse now and if someone is staring or asks about my vitiligo, I can give them a card, if I feel like it. An example of what happened to me At school two boys were making fun of me and my friend. My friend breathes loud because of her asthma so they said something about that. They said my skin was ugly. We told them to stop but they wouldn't, so we told a teacher. The teacher told them to apologize and if it happened again they would be suspended. It hasn't happened again. If someone makes fun of you, you can just walk away. Or you could tell them you just have two colors of skin. If they keep bothering you, after you tell them to stop, you can ask you teacher, parent, school nurse, principle or older brother or sister for help. FEELINGS I feel different things at different times. Most of the time I'm happy but it's okay to be sad sometimes too. If you're sad, I know how you feel. I feel sad when people call me names. I feel hurt by what they say. Even though I realize they just don't understand, or they're just trying to make themselves look better, it still hurts sometimes. Sometimes I get mad that they could be so stupid and say such dumb things. I get frustrated when my mom tells me I have to put the cream on...AGAIN Sometimes I just don't want to do it. I feel like I'm just fine the way I am, why should I have to put on the cream. I know, mom says if I get my color back I might be safer in the sun, but I still don't like putting it on. I feel HAPPY when I get to travel and see my friends that have vitiligo. I went to the First Vitiligo Convention in March of 2000. It was in San Francisco. I met other kids and adults that had skin that looked like mine. One boy came all the way from Hawaii! Some had it all over, like me, and some just had a spot here and there. I really enjoyed talking with everyone. I stayed up until midnight! Over the summer we went to Europe. My mom talks with other parents on Vitiligo Support.org. She had been talking to another mom in England. We got to meet her son who was my age. His family was really cool. I had fun playing with him and his little sister. He just had one small spot on his lip. When I was really little I think I thought I was the only one with skin like this. (I felt alone) My mom discovered through the Internet that there are people from all over the world with vitiligo. We put up a map of the world on our wall and we put pins in the places that everyone was from. It made me feel better to know there were a lot of others, all over the world that looked like me. There was even a man from Abu Dhabi, by Saudi Arabia. He told me he walked by alligators to get to work! PROJECTS: PUT UP A MAPAsk your parents if you can put up a map of the world and track where everyone is from. I mounted my map on foam core board so I could push the pins in and not go through the wall. I put a little paper flag on each pin with the persons name on it, and then stuck it in wherever they lived. You could have different colored flags for boys and girls. You will need some help from a parent. Have them get on one of the Vitiligo Websites. Vitiligo Support is my favorite but there are others. Then have your parent post a message and ask where everyone is from. Tell the members on the list what you are doing with the map and flags. LEARN A NEW SONGHave you heard a song called True Colors, by Cindy Lauper and Phil Collins? I thought they were singing Two Colors when I first heard it. I said Hey, Mom; they should have this as the Vitiligo theme song because I always say I just have two colors of skin. Here are the words to True Colors but we changed them to "TWO COLORS".You with the sad eyes Don't be discouragedOh, I realize It's hard to take courage In a world full of people You can lose sight of it all And the darkness inside you Can make you feel so small Chorus: But I see your TWO COLORS Shining through I see your TWO COLORS And that's why I love you So don't be afraid to let them show Your TWO COLORS TWO COLORS are beautifulLike a rainbowShow me a smile thenDon't be unhappy, can't remember When I last saw you laughing If this world makes you crazyAnd you've taken all you can bear You call me up Because you know I'll be there And I'll see your TWO COLORS... Chorus When my mom and I were looking for the lyrics to the song True Colors we found this interview. We thought you might like to read a few of their answers. Questions for Cindy Lauper and Phil Collins about True Colors Q.Why does he speak of true colors?A."True" means natural, not artificial, not just for show. The friend seems to hide himself behind fake colors; he wants to make believe that he is someone else. In the long run such a disguise makes you ill. Q. Is it good if someone accepts your True Colors?A. Yes, I think so. If someone urges you to change yourself, it implies that he/she does not accept and love you just the way you are. If somebody accepts all your weak points, it means that you don't have to disguise yourself in front of him/her, that you can be yourself. CARDS You can print out your own cards. Try to print them on colorful paper and you can color or you can put stickers on the back of each card to make them more fun. PLAY ACTING Practice play-acting what to say if someone asks about your vitiligo with your mom or your sister, or dad, or whoever you feel comfortable with. Sometimes I pretend my mom has vitiligo and I ask her about it. Sometimes we pretend like someone just wants to know more about it so I say it's just the loss of color or pigment in my skin. I just have two colors of skin. You can't catch anything. Would you like to feel it? It feels the same as your skin If someone is trying to tease me, I have a different way to respond. I can walk away or I can ask them to stop. I usually try not to show that what they are saying bothers me. I try to remember that if someone is making fun of my skin, it's not me that's the one with the problem. I also know that I don't need to get back at them. We usually end up joking around and laughing, so don't take it too seriously. Have fun with it. PUPPETS You could make sock puppets to talk back and forth about vitiligo, or you can have them talk about whatever you want. You will need: 1 sock per puppet (make sure you ask your parent for an old sock) Buttons or googly eyes for eyes Felt or pompom for the nose Felt for the tongueYarn for the hair Markers to draw on the vitiligo Material for the clothes Glue or needle and thread to put it all together. Use your markers to color on the vitiligo spots. You can be creative and use any colors you like. Sew or glue on the eyes and the nose. Cut the felt to look like a tongue (a long U shape) then hold your sock on your hand to find where the mouth will go, then glue the tongue in place. Sew or glue the yarn on for hair. For the clothes just use a rectangle of material and wrap it around to look like a shirt or dress. Don't make it too tight or you won't be able to get it on and off your hand. You can add lace and buttons for girls or add a collar for boys. If you don't have some of this stuff you can just draw it all on. MY DISCOVERIES I have made a few discoveries while living with vitiligo. One is that I'm not the only one in the world that is different. Every kid in my class has something that makes them different. I think I used to wonder why I was the only one that had to be different, but now, when I really take a look at everyone around me, I can see that no one is perfect. The second thing I figured out was that, so far, there's nothing I can do about my vitiligo. The only choice I have is how I deal with it. I can be really angry and bothered by it or I can choose to make the best of it and accept that this is the way it is for now. I'm going to have vitiligo whether I'm happy about it or not. Why not choose to be Ok with it and focus on the good stuff in my life? If some jerk teases me, I'm not going to let him ruin my day. Some person I don't even know cannot decide what I think of myself. I have lots of friends and family members that love me just the way I am, and they count MUCH more than some rude goof ball that doesn't even know what he's talking about. Another discovery is that I am WAY more than just my vitiligo. I'm talking about it a lot at this site because that's what everyone is here for, but normally I don't really talk about it or think about it all day. I have lots of other things to think about. Some of them include.... ARTI like to draw and paint and do crafts. MUSICI play the clarinet. I love music and want to be a singer some day. I sing around the house all the time. I have a little piano keyboard that I take everywhere and sometimes I make up songs. The Backstreet Boys, Brittany Spears, Santana, Madonna, B.B. King, Natalie Cole, Seal, Celine Dion, Chris Isaac, Buckwheat Zydeco, Christina Aguilera, and Ricky Martin are just a few of my favorites. FRIENDSI have friends over a lot and sometimes we make up games to play. Sometimes we put on plays or we do chalk on our driveway. A lot of my friends are in my Girl Scout troop. We do all kinds of fun stuff like camping, field trips, crafts and camp outs. In the summer I go swimming in the pool with my friends almost every day. I like to swim with my dad too. BEACH We live by the beach and sometimes I like to go boogie boarding. We usually go towards the end of the day so I don't have to put so much sun block on. The sun is not so bright and parking is better. Sometimes we bring food and have dinner there and watch the sun go down. READINGI love to read. Some of my favorite books are: Harry Potter, By J.K. Rowling (All 5) Holes, by Louise Schar Good Burger to Go By Steve HollandDifferent Just Like Me, by Lori Mitchell (My Mom!) I like all the I SPY books. The ones where you have to find the objects in the pictures.

My favorite magazines are: Disney, Nickelodeon and National Geographic WORLD magazine. MY CATMy cat is the cutest in the world. Her name is Allove. I found her in the street at my uncle's house. She was dirty and covered in fleas but she jumped up into my arms and purred. She was so sweet. Since she didn't have an owner we took her home and cleaned her up. She was really loving so that's how she got her name.

Taken from: http://www.vitiligosupport.org/justforkids.cfm

Sunlight & Vitiligo

Sunlight can be used if the prescription light sources are not available. Some doctors allow patients to combine sunlight with Protopic/Elidel or topical steroids, while others do not. PUVA-Sol is a form of PUVA with an oral or topical psoralen which is used with sunlight rather than artificial UVA light. Moderation must be used, however, as burning the skin can damage it and possibly cause the vitiligo to spread. When using sun as a therapy, it is important to start slowly and gradually build up time. A pink color (not red) in the vitiligo areas a few hours after sun exposure is the desired effect. As the skin becomes accustomed to the sun, it can take longer to achieve pinkness. Like any other treatment, sunlight would need to be used at a therapeutic level consistently for it to be beneficial. Safety - It should be noted that NB-UVB is safer for the skin than sunlight. Sunlight contains the UVA rays which penetrate the skin more deeply than the UVB rays. Recently, scientists have learned that UVA rays while not contributing to sunburns, damage deeper layers of the skin and probably play an important role in wrinkling, spotting, lost elasticity and the dangerous skin cancer melanoma. UVB are the burning rays. By using Narrow Band-UVB you can achieve a therapeutic level of treatment in just a few minutes as opposed to the longer times required by sunlight, reducing your overall exposure to these potentially damaging rays. There is growing evidence that vitamin D levels are often low in those with autoimmune disease; whether this is a cause of the disease or a result of it is as yet unknown. Sunlight in moderation (15 minutes a day 3 days a week) can help build up the vitamin D level and support the immune system, while also stimulating pigment cells. Vitamin D supplements can also be used. Taken from: http://www.vitiligosupport.org/treatments_and_research/sunlight.cfm

THE BIOSKIN EVOLUTION® THERAPY

The latest scientific knowledge on the vitiligo consider it as a dermatosis due to multiple factors and that it can have different aspects according to the triggering cause. In fact, this is not simply a disorder of pure cosmetic interest, but would result from little defects (probably genetic ones) that can cause thyroid unbalance and to other organs of autoimmune nature. In order to know the indicative evaluation of the effectiveness of the BIOSKIN EVOLUTION® therapy in your specific case, it is necessary to fill out the questionnaire following which you will have an answer by e-mail. Besides, in order to be able to understand if these problems subsist for the individual patient, it is necessary to carry out some blood tests to evaluate the possible involvement of the above mentioned organs. Once these examinations are carried out, we will have a global vision of the patient and would be able then to begin a specific and personalized therapy. WHAT IS THE BIOSKIN EVOLUTION® THERAPY.In order to understand the BIOSKIN EVOLUTION® therapy it is necessary to have some basic knowledge in dermatology. The melanocytes are some cells located in the deeper layer of the epidermis (that it is not other than the most superficial thin veil of our skin and it has an average thickness of 0,4 mm) and that during the pathological process leading to the vitiligo are "inactivated" or "killed". The melanocytes being the cells, which contain (the main colour of the skin), their absence is revealed by the lack of colour in the affected zone: this is the vitiligo. Yet the epidermis is not the only zone of the skin provided with melanocytes. In fact, the colour of the hair and of the hairs is precisely due to the melanocytes being situated close to the hair bulb (in the zone known as perifollicular) placed much more in depth compared to the epidermis. These deep melanocytes are very rarely interested by the process that causes the vitiligo and, if opportunely stimulated, they can multiply themselves, climb back in the epidermis and give rise to new pigmentation, and therefore to the cure of the spots. This phenomenon, that sometimes is spontaneous or caused simply by the exposure to the sun, shows itself through the appearance of circular points of pigmentation in the zones made achromic (that is without colour) by the vitiligo. In the illustration 1 (a and b) it may be noticed how the skin of the hands of a subject before the therapy (a) and during (b) the treatment with BIOSKIN EVOLUTION® is giving rise to these "tokens" of pigmentation that will increase of diameter and they will unite themselves, to give finally to the skin its normal pigmentation. The medical research and today's technologies have allowed to determine the wavelength (among all the ones of the solar spectrum) that stimulates more effectively the melanocytes to duplicate and to produce melanin (311 nm). BIOSKIN EVOLUTION® allows us to be able to convey this wavelength exclusively on the vitiligo spot and in depth towards the perifollicular melanocytes without causing the damages due to all the other solar radiation of which mainly infrared and ultraviolet rays A. THE NEW THERAPY FOR THE CARE OF THE VITILIGO:BIOSKIN EVOLUTION® THE LATEST COLD-LIGHT GENERATION MICROPHOTOTHERAPYA new and sophisticated emitting equipment of the ultraviolet B rays to 311 [nm] can eliminate the cutaneous dyschromias caused by the vitiligo. It is about THE LATEST GENERATION MICROPHOTOTHERAPY BIOSKIN EVOLUTION® performed with an innovative equipment, which emits in a specific and selective way a bundle of ultraviolet light of type B able to stimulate the dormant melanocytes cells gradually, thus allowing to look after the disease in the least time possible and not to increase the contrast of colour between the healthy skin and the patched vitiligo.To obtain this result biomedical engineers supported by dermatologists researchers they have planned and built an electronic generator, protected by an international patent, with a very high percentage of UVB rays able to focus the light bundle exclusively on the vitiligo spots while using a particular optic fibre.The emitted UVB rays are the most effective ones in the therapy of the vitiligo because they stimulate in an optimal way the melanocytes and are active on the immune system of the skin. The bibliography in our web site lists the principal international scientific works documenting the effectiveness and lack of noteworthy negative side effects of the therapeutic UVB rays on the human skin for the dosages relating to the BIOSKIN EVOLUTION® therapy.Otherwise from all therapeutic approaches which use ultraviolet radiation on full cutaneous surfaces, the BIOSKIN EVOLUTION® therapy, because it only conveys microdoses of energy on the affected cutaneous zones, does not provoke the photo ageing of the skin. The BIOSKIN EVOLUTION® therapy is adapted to the requirements of every individual patient, as well with regards to some characteristics of emission of the ray as for the duration of each therapeutic treatment. We are in any event able of providing a general model of the BIOSKIN EVOLUTION® therapy. Every session, carried out exclusively by a doctor, it consists of an irradiation of the UVB rays on the spots concerned only, excluding any healthy part. The ray, conveyed by optical fibre is applied for a maximum duration time of 10 seconds on every square centimetre of the spot. Thanks to the use of a diaphragm placed on the terminal of the optical fibre and which is modified according to the characters of the interested area, the doctor can modify the diameter of the area to be treated for any particular case. Different to the other therapies based on the use of the UVB, this one doesn't provoke any pain, burn or other discomfort, neither during the treatment nor in the following days. The therapy must be repeated once per month, effecting altogether 1-3 sessions in the same day in accordance with the therapeutic protocol determined by the dermatologist for each individual patient. The therapy has never highlighted any negative side effects. The treatment has a variable general duration in accordance with the extension of the affected zones and the reaction of the subject. There are conditions of relatively constant reaction for each patient. The face, the groin, the armpits, the genitals, the neck, the breast and the thighs are the areas which repigment first, while the terminal zones close to the fingernails of the hands and the feet require in general, a superior lapse of time. Usually after 8-10 sessions it is possible to have an idea of the recovery speed of each spot of vitiligo for each individual patient. From: www.vitiligo.it

What is Vitiligo....??

Vitiligo (pronounced /vɪtəˈlaɪgoʊ/) or leukoderma is a chronic skin disorder that causes loss of pigment, resulting in irregular pale patches of skin. It occurs when the melanocytes, cells responsible for skin pigmentation, die or are unable to function. 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 population incidence worldwide is considered to be between 1% and 2%.[1] According to Diseases Database: "A disorder consisting of areas of macular depigmentation, commonly on extensor aspects of extremities, on the face or neck, and in skin folds. Age of onset is often in young adulthood and the condition tends to progress gradually with lesions enlarging and extending until a quiescent state is reached."

I am a Vitiligo Victim

I have Vitiligo, What happened to my skin?? I HAVE VITILIGO........... I never knew that word 5 years ago! Like most people in this world, I would wake up and get dressed and NEVER think of what I was going to wear and whether it would show my skin or not. NO ONE thinks about showing a little skin, especially if it is hot outside! That is why they sell shorts and short sleeve shirts! BUT.....If you have Vitiligo....your wardrobe changes...unfortunately. Here's my story: I was blessed by my parents to have been raised in the 50's, 60's and 70's with a stable and adventurist childhood. We were very active in everything. Sports, family, church, piano lessons, swimming and stability. I was always thin and , once again blessed with good looks( so I've been told!)I went on to be a Mother, flight attendant, model, Real Estate Investor and Director of a Corporate Division. All the while, I have always been so personable, loving people and being around people. I attended party's, balls, theater, everything I could and wanted to! I traveled and loved meeting people everywhere. WHY am I boring you with all this????? BECAUSE .....Vitiligo took all that fun and confidence away from me!!!!! I can not wear what I want to wear anymore, I can not just attend functions during a hot summer afternoon, because I will faint from heat exhaustion by wearing long sleeves and having to cover myself up!(I know.....you're saying....how vain!!!, but it's not to ME!! This is a socially devastatingly disease and I have met people who haven't left their houses for years because of it! It effects you emotionally and you all of a sudden feel like a freak!Vitiligo (vit-ih-LI-go) is a condition in which your skin loses melanin, the pigment that determines the color of your skin, hair and eyes. Vitiligo occurs when the cells that produce melanin die or no longer form melanin causing slowly enlarging white patches of irregular shapes to appear on your skin.An estimated 1 to 2 million Americans have vitiligo. It affects both sexes and all races, but is often more noticeable and more disfiguring in people with darker skin. Vitiligo usually starts as small areas of pigment loss that spread and become larger with time. These changes in your skin can result in stress and worries about your appearance.There is no cure for vitiligo. The goal of treatment is to stop or slow the progression of pigment loss. And then attempt to return some color to your skin.I live in Florida...ALOT of sun here...and I tend to get tan(only where there is pigment left) without even trying. It looks terrible! I try to stay out of the sun, but it's difficult. ALSO, some cures actually suggest natural sunlight daily.OK, so that's a brief description of my 5 years of having this disease. NOW I want to try and help other "victims" with all my research and treatments. I won't stop my research ever on this awful condition!! Mark my words! I am not going to stop trying...I am not a physician, nor do I have any medical training at all. I only do research on what interests me or what bothers me or someone I care about. With that said, do not take my blog as a cure, only as someone who cares and wants to share my research. YOU decide what is good for you, as we go along. This blog will be long and not be complete until we find a cure, so sit back and just check in once in awhile. I read Lee Thomas' book, "Turning White". I met him at the National Vitiligo foundation conference in Cincinnati, Ohio. He is a newscaster from Michigan with vitiligo and has it alot on his face. He can not go on camera as he is without makeup, because no one will pay attention to what he is saying. THEY WILL JUST LOOK AT HIS VITILIGO ON HIS FACE! It's a great book, I really enjoyed it and enjoyed meeting him. He mentions in his book that he "was a prisoner of this disease, trapped. The vitiligo had" held him hostage and he knew who he was on the inside but my exterior terrifies me". He has since found his own way to deal with it and go on. I joined the National Vitiligo Foundation several years ago and did attend one conference so far. It was a good feeling to go there and feel normal amongst those who understood. They also held several informational sessions , mostly by doctors, for educational purposes and to update us on current research. They also have updates on their web site if you join. The web site is nvf.org and it is a good tool in keeping up to date on current treatments and research. I started my research by Internet, of course. I am on the web all the time and always researching. My 1st dermatologist recommended Protopic cream and UVB light treatments. I went to the office for several treatments, twice a week. It was a good commute and I finally asked my medical assistant if I would qualify for a UVB light in my own home through my insurance. She administered the claim, and low and behold... I was granted my own UVB light! It cost me $500.00 out of my pocket, but it was a $3500.00 piece of equipment. It was delivered and I began my sessions......with all the hope in the world!! Wow, I finally thought I had my cure to this terrible disease!!! Well... I'm sure that the UVB light works and I have heard success stories about it, but at that time in my life and my stage of Vitiligo, I only had it on my feet and hands. I was told to cover up all other areas of my body, and only expose my hands and feet to the light. It's really hard to get this light to your hands and feet. I believe the hand held light would be a better solution. I still have this light and it would be a wonderful thing to share with someone who does not have health insurance! I would do that in a minute just to help another victim of this disease!!!! The light is one of a very few solutions that doctors can give right now, along with a few different topical cremes. I have always used Protopic, it is an immune suppressor, and really helps with the itchy skin. I found when I was losing my pigment, that my skin really itched bad! The more I scratched it, the worse it became and then the immune system would send a "signal" to that overly scratched area and it would precede to do it's job of curing the "itch" but it would ALSO continue to destroy my pigment. It was like it did not know when to stop it's so called "protective mode"!! I find now, that I will never scratch myself to any extent, out of fear for my pigment to be lost!!! I went to a few dermatologists during my time for this condition and had found out that there are different suggestions of treatment with different doctors. BUT..... they are all still limited to the ways to try to bring back pigment. There is still no real understanding of this disease and how to "cure" it. So it is trial and error on everyone individual. My 1st doctor put me in the UVB light treatments twice a week with Protopic applied every day, twice a day. The office was about an hour away from my house, so after about 3 months of commuting there, I asked if I could get the UVB light for my home. They approached the insurance company and to my surprise they approved a $3500.00 machine, with me having to pay a $500.00 deductible. I continued to call the office for advice with the machine on occasion, but as I mentioned before, I only had the vitiligo on my feet and hands at the time, so I was covering up the rest of my body and only trying to expose my feet and hands to the light. ( Little did I know, my immune system had more plans for my body, and continued to attack the rest of my skin! There are a few types of vitiligo, some people have only a few spots with no more spreading, some people had it only in different areas of the body and then there are people like me, who have it symmetrically, both arms, both legs, both feet and hands are attacked exactly alike on both sides of the body. I had done and still do, alot of Internet research. I have read years of articles on vitiligo and they all seem to say basically the same thing...UVB light and topical treatments. There are MANY sites out there offering various pills, and I have not tried any of them EXCEPT one that my dermatologist said another patient of hers had been on and she saw significant difference from supposedly the pills....??? So with that said, I bought those pills.. Vitilax.. and have been on them for over 4 months now. NOW, they claim that with advanced vitiligo, the kind like I have, you MUST take the herbs ( 12 a day) for at least 4 months. So I am in the "lets see something happen now stage"! With that said, there is no one agreed upon way to treat vitiligo. Treatment can be specific to each individual case, but there is no cure yet, so the results usually vary. Either way , several treatments a week are necessary to obtain results. the best results are seen on the face, and the hands and feet are the hardest to re pigment. The last resort is to completely depigment, and this should be a procedure done after talking to a mental health professional first, since it is permanant at this point. Vitiligo is known to be associated with autoimmune diseases, especially thyroid disease. Be sure to have your thyroid checked on a regular basis if you have vitilgo. You should do your own research and become familiar with all of the autoimmune diseases. This is not only a cosmetic disease, but also a very traumatic, emotional issue. With white spots all over your body , or worse yet on your face, you become someone who people stare at and look at as abnormal. You tend to cover up and shy away from the world and the social life you used to know. IT IS DEVASTATING! I have meet several people with Vitiligo, and some men I have met, do not seem to be as bothered with the disease. They are aware of it , but do not educate themselves, even as is the case of one of them, he did not even know how to pronounce the word " vitiligo". BUT , this is not the norm, since I have meet many men at my conference at the National Vitiligo Foundation that traveled far to be there due to their concern about their looks. My heart cries out for the darker skinned people, since it is very obvious, the darker the skin. I tend to have french blood in me and my Mother was a darker skinned french woman, so my skin looks tan all the time. With that said, my vitiligo shows up more! I have always THOUGHT that Michael Jackson has Vitiligo, but he refused to tell the public about his disease. He kept it quiet somehow, and therefore no one still knows whether he had the disease or not. He could have been the best spokesperson we ever could have had! He could have told the world about the terrible, social, emotional disease! If he did or does have it, he has done all of us that are suffers a big dis-service! I understand his embarrassment and fear of rejection, but he was our one hope, due to his fame! It takes a big person, not a big star to help others. The "star" part only gets more recognition. WE NEED a good Spokesperson for this disease, NO ONE knows about it! I have had doctors and nurses look at me with a quizzically look, not knowing what I was talking about when I said I have Vitiligo! My sister who has been a nurse as far back as I can remember, had never heard of it! If this disease does not get enough exposure, then we will continue to be in our own little world, without a lot of help. The word NEEDS to get out! Thanks to the National Vitiligo Foundation, they are really trying to help! They are conducting a lot of research, and starting support groups nationwide. I have continued my research and am now on a Chinese herb called Vitilax from the Merry Clinic. I heard about these herbs from my dermatologist who was starting to treat another patient. We all have to go thru an initial consultation with the dermatologist before we can get treatment. The insurance company is alerted and the wait for approval can take up to 6 weeks to get it back. I went thru the waiting period , as did this other woman, BUT she had started taking the herbs in between. ( the herbs take up to 3 months to show signs of improvement). My dermatologist told me that when she came back for treatment after approval from her insurance that she had shown signs of visible improvement within that waiting period. Well.......that's all I needed to be convinced that this was something I needed to try!!! So, I bought my first 3 bottles ( not real inexpensive) and since they say on the web site, if you have vitiligo all over your body like I do, it would take up to 4 months to see any improvements! I take 12 CAPSULES A DAY!!!! 6 in the morning and 6 at night! Well needless to say, those first 3 bottles did not last very long!!!! I am still on them, and now it's been 4 months...so I'm still waiting and watching! Below is a photo of my skin and the effects of the XTRAC Excimer Laser :: We'll begin to talk about that treatment next. If you suffer from vitiligo, you know the frustrations - white spots that cause uneven skin color and, until now, no effect treatment.Finally you may be able to enjoy effective relief from the unsightly symptoms of vitiligo. With the revolutionary XTRAC® excimer laser system, you can feel good about yourself again. With treatment sessions which can last just a few minutes, the XTRAC can change your life.XTRAC Laser Cleared For Vitiligo Treatment .The XTRAC is the first excimer laser system FDA-market cleared to treat vitiligo. The XTRAC laser utilizes UVB light to potentially stimulate melanocytes that may be present deep in the skin. UVB light is known to stimulate melanocytes. Clinical studies have indicated that the XTRAC laser tends to be most successful treating vitiligo on the face and neck, and least successful in the hands and feet. I am hoping this is not completely true, since I have lost all color on my hands and feet! I have been told this treatment is truly VERY successful with vitiligo on the face. That is a WONDERFUL THING! I do not have it on my face (thank GOD) ...

Dermalight80 for spot treatment of Vitiligo

The new UV-comb for the effective phototherapy Light-guiding, rounded comb attachment for a smooth and precise spot treatment of the scalp Wide treatment area

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Short treatment time

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Ideal for in-home therapy

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Manufacturer: http://www.drhoenle.de/

Vitiligo phototherapy: Effectiveness of UVB

American Academy of Dermatology. Study Confirms Effectiveness of Revolutionary Vitiligo Treatment SCHAUMBURG, IL (July 12, 2001) – Imagine feeling perfectly healthy on the inside, but on the outside something looks wrong. For millions of people who suffer from vitiligo, a disease in which patients experience a complete loss of pigment in localized areas of the skin, this feeling is one they know all too well. In a new study by dermatologist Henry W. Lim, MD, chairman of the department of dermatology at Henry Ford Hospital, Detroit, Mich., the effectiveness of narrow-band UVB (NB-UVB) phototherapy as treatment for vitiligo was examined in a small sampling of patients. The results of the study are promising for this often hard-to-treat skin condition. After completing an average of 19 treatments with NB-UVB phototherapy, five of the seven vitiligo patients that participated in the study showed greater than 75 percent repigmentation. Additionally, one patient has remained repigmented 11 months after phototherapy was discontinued. "The successful repigmentation that these patients experienced is quite remarkable," explained Dr. Lim, co-author of "Narrow-Band Ultraviolet B is a Useful and Well-Tolerated Treatment for Vitiligo" published in the June 2001 issue of the Journal of the American Academy of Dermatology. "Vitiligo is a difficult skin condition to treat, and patients are often frustrated because results from some of the other current treatments are not nearly as favourable." Vitiligo is a disease in which patients have a complete loss of pigment in localized areas of the skin. These areas, often around the mouth and eyes, become completely white. As a result, vitiligo can be cosmetically disfiguring, especially for dark-skinned people. Vitiligo affects 1 percent to 2 percent of the worldwide population and about half of the people who develop it do so before the age of 20. About one fifth of those with vitiligo have a family member with this condition. Vitiligo usually affects both sides of the body, and although the cause is generally not known, it is believed to be an autoimmune process. During the twelve-month trial period, 11 patients participated in Dr. Lim’s study. Therapy was administered three times a week and affected segments of the body were treated with NB-UVB, a light source that emits a very narrow spectrum of UVB, the portion of sunlight that causes sunburn. The dose of radiation was increased by 15 percent for each treatment. If mild burning, pain or blistering developed, the irradiation dose was decreased. Once the desirable 75 percent repigmentation was achieved, the frequency of treatments was tapered to twice a week for four weeks, then weekly for an additional four weeks. NB-UVB therapy has several advantages over other therapies for vitiligo. While topical corticosteroid therapy has a success rate of 56 percent, long-term use of corticosteroids can result in thinning of the skin, stretch marks, and dilation of blood vessels. Another treatment option is oral or topical psoralen plus UVA (PUVA), the latter which has a success rate of 51 percent. However, patients need to ingest or apply psoralen before getting the light treatment, and long term use of oral PUVA for another skin disease, psoriasis, has been associated with an increased incidence of skin cancer. presently, there are only a few centers in the United States that have the capabilities for NB-UVB therapy; therefore patients undergoing this therapy have long distances to commute. While NB-UVB therapy has been used in Europe since the mid-1980s, there has not been any evidence that it causes an increase in skin cancer. "Our findings confirmed that narrow-band UVB therapy is a useful and well-tolerated treatment option for patients with vitiligo," says Dr. Lim. "Although more research needs to be conducted, the successes thus far are promising to those who suffer from the psychological and physical effects of vitiligo." Narrow Band UVB phototherapy has consistently achieved over 90% repigmentation within a year for most patients. Neighbouring pigment cells will produce new pigment into the Vitiligo patches providing the melanocytes still exist in the adjoining areas of skin.

Protopic Immunomodulator

Protopic, the first in a new class of drugs called topical immunomodulators (TIMs) shows promise as an innovative treatment option for Americans with Vitiligo, a difficult skin condition characterized by stark white patches of skin throughout sufferers' bodies caused by a mysterious loss of pigmentation. "We achieved success with Protopic in restoring pigment to affected areas in 100 percent of patients tested," said Pearl Grimes, M.D., Chair of the Vitiligo & Pigmentation Institute of Southern California and lead investigator of the study presented at the 60th Annual Meeting of the American Academy of Dermatology in New Orleans. "This is an early sample of the database we now have of patients treated with Protopic for Vitiligo. We have experience with more than 150 patients and we have the utmost certainty that Protopic assumes a place in the hierarchy of treatments for vitiligo for children and adults." The poster presentation included results with six patients ranging from 7 to 38 years of age. Patients applied tacrolimus ointment to affected areas of their bodies twice daily for a period of one to five months. Various degrees of repigmentation were achieved in all patients, with one patient experiencing excellent repigmentation (100 percent) four patients experiencing moderate repigmentation (50-75 percent) and one patient experiencing mild repigmentation (25-50 percent). Vitiligo can affect anyone, but the condition is more obvious on people with darker skin. Light skinned people usually notice the contrast between areas of Vitiligo and suntanned skin. Overall, Vitiligo affects one or two out of every 100 people. Commonly affected parts of the body include the face, hands, arms, legs and genital areas. Vitiligo is not associated with any other physical health problems, although many people with the distressing condition are afflicted with low self-esteem, depression, job discrimination and other psychological disorders related to their appearance. Although doctors do not know what specifically causes Vitiligo, research indicates that genetics might be a factor. Protopic (tacrolimus ointment) was approved by the FDA in December 2000 for the treatment of moderate to severe eczema. Tacrolimus is part of a new class of drugs called topical immunomodulators, or TIMs, and was the first new class of treatments for eczema approved by the FDA in more than 40 years. Protopic's safety and effectiveness was based on 28 worldwide clinical studies of more than 4,000 adults and children (as young as 24 months of age) suffering from moderate to severe eczema. FDA Approves Protopic (Tacrolimus) Non-Steroidal Ointment For Eczema DEERFIELD, IL -- December 11, 2000 -- A new option is on the way for the 15 million Americans who currently suffer from the painfully itchy skin disorder atopic dermatitis, more commonly known as eczema. Fujisawa Healthcare, Inc., announced today that the U.S. Food and Drug Administration (FDA) has approved Protopic® (tacrolimus), a non-steroidal topical ointment, for the treatment of the signs and symptoms of moderate to severe eczema. The 0.1% concentration of tacrolimus ointment was approved for the treatment of adults and the lower 0.03% concentration was designated for the treatment of both children (ages two and above) and adults for short-term and intermittent long-term therapy. Protopic is the first in a new class of drugs called topical immunomodulators, or TIMs, to be developed in more than 40 years for the treatment of eczema. The approval of this steroid-free option offers significant hope for those experiencing the devastating physical and emotional effects of atopic dermatitis. Protopic is also being tested for use in treating Vitiligo and other skin disorders. "Today's FDA approval of Protopic marks a milestone for eczema sufferers and treating physicians," says Dr. Amy Paller, Professor of Dermatology and Pediatrics and Chief of Medical School in Chicago, Illinois. "As a pediatric dermatologist I see first- hand both the physical and emotional difficulties young eczema sufferers experience. The approval of Protopic finally gives prescribing physicians an effective, non-steroidal option for treating the often painful and frustrating symptoms resulting from eczema." Protopic's safety and effectiveness was based on 28 worldwide clinical studies of more than 4,000 adults and children (as young as 24 months of age) suffering from moderate to severe eczema. The studies were conducted in the United States, Europe and Japan. Over one-third of the patients were children. The study data reported that both concentrations of Protopic significantly improved or cleared the signs and symptoms of the condition in more than 2/3 of the patients. In fact, many patients showed marked improvement in just one week of treatment. Conventional therapies for eczema have been limited and variable outcomes have been reported. Routine treatment frequently includes the use of steroid creams applied to the skin. Steroids have been associated with side effects including: skin thinning, stretch marks and skin discoloration. Physician and patient satisfaction has been disappointing. Protopic offers physicians another treatment option when conventional treatment is deemed inadvisable because of the potential risks associated with them, or when patients are not adequately responsive to or intolerant of conventional therapies. Similar to other dermatological products currently on the market, Fujisawa advises that patients practice safe sun techniques to avoid direct exposure to natural or artificial sunlight. Some patients reported skin burning and itching associated with the application of Protopic however, the incidences of these events decreased as the disease improved. Eczema is a chronic, life-altering disease characterized by painfully red, swollen, itchy, flaky skin. In some cases the itching and redness is so vast and intense that sufferers will scratch themselves until they bleed, increasing the risk of secondary infection. The majority of eczema cases are diagnosed in early childhood. While 40 percent of children suffering from eczema outgrow the disease, others live with it throughout their lives. Since 1970 the prevalence of atopic dermatitis has nearly tripled. Studies show that the steady increase of this chronic condition is generally attributed to irritants and allergens that trigger the immune system. Emotional factors such as stress can also influence and worsen the condition. In addition to the physical symptoms, atopic dermatitis also diminishes the quality of life of patients and their families. For sufferers, especially teenagers, the visibility of eczema flares can lead to low self-esteem and often the inability to interact with others. Recent survey data from the National Eczema Association for Science and Education states that 56 percent of respondents feel embarrassed or self-conscious in public during a flare and 80 percent experience disrupted sleep. Atopic dermatitis sufferers and their families also say that leisure activities in their daily lives, such as playing sports or taking family vacations, are also disrupted. To address the emotional effects of eczema, Fujisawa Healthcare conducted Quality of Life Studies as part of their clinical trials that were presented in March 2000 at the 58th meeting of the American Academy of Dermatology (AAD). Patients, parents or guardians involved in the 12-week medical study completed a survey that scored the physical and emotional improvement of the patient and family in question. "Our Quality of Life (QOL) assessment found that eczema sufferers treated with Protopic had significant improvements in sleep, symptoms, everyday activities and feelings," says Dr. Lynn A. Drake, Massachusetts General Hospital, Harvard Medical School. "I've suffered emotionally and physically from eczema since I was a baby," says Sarah Robb, fourteen year-old eczema sufferer. "I couldn't sleep, I couldn't wear tank tops to school without embarrassment and I even had to give up going to summer camp with the other kids. Protopic ointment has cleared my skin. I'm wearing tank tops to school and taking part in all the activities, even camp, that I couldn't before. I feel like I can live normally again -- and so can my family."

My Vitiligo

Hi... I am Wissam, man, married with 3 kids, Just recently I noticed few white patches on my face and neck, at the beginning I thought it is only Fungus or some skin infections. But after visiting my doctor... he said...You have vitiligo.. Vitiligo??, what was that?.. My doctor said... you know the famous singer Mickel Jakcson, You have similar skin disorder, but you still in the beginning... Now after 6 months... I have started treatment.. during that time, I went through many internet material for study, and the most that make me happy, the fact that.... I am not alone.... Welcome to my Blog..