20 February 2009

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) ...

17 comments:

  1. See any results from vitilax?

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  2. its my first month of taking vitilax and my spots are still there (around my eyes like panda bear : ] ) but they dont grow.... and I always had troubles to get tan but after one month of taking those pills I am getting tan without even trying... I guess its a good sign showing that there is something going on with my pigmentation : ) I believe in it and as soon as new improvement shows up i will let everybody know!!!

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  3. I have to say that after reading this I don't feel as bad about myself. I have had vitiligo since I was 8 years old, and have come to terms with it for the most part. My skin is constantly changing, and if people cannot accept me as I am...then I simply do not need them in my life.

    End of story.

    Everyone is beautiful in their own way, and we that suffer from this disease are just far more unique than the norms.

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  4. I like waht you said , and very much agree with it.

    ---Everyone is beautiful in their own way, and we that suffer from this disease are just far more unique than the norms---

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  5. hi wissam i read your other wedsite before and u said u have sucessfulyy clear your vitlilgo ..usinf protopic and nb uvb is that ture caz i got vitlilgo on my face what should i do now
    i been just on protopic at the monment... should i buy a hand held nb uvb to treat as well

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  6. Yes , you should buy hand held UVB and start the treatment immediatly, Please refer to another post in this blog for treatment dosage and time.

    Keep us updated.

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  7. I have a ten years vitiligo.I heard about vitilax and I try it now.It is a miracle for me.The first dark spots appeared in 2 weeks.After 5 months the disease is almost gone.I don't know other consequences but it works.That's all I can say!GOOD-LUCK!!!!

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  8. This is great!!, which araes you treated, and do you feel any side effects so far?

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  9. My mom had it, and now my sister and I have it... although I do go through my share of pain, I refuse to cover myself up b/c people act ignorant. Depending on my mood I either ignore the stares or I informed them of how rude it is to stare, I rather you ask questions... so with that they walk away feeling and looking stupid LOL. I never ever attempted any type of treatment and still a little confuse on whether at this point I do. I am pursuing my acting career that has taking me over 20 years to attempt. I was diagnosed with Vitiligo at the age of 23 and I am now 42, she has become my best friend.. It's the only way I can look at it, if not it would drive me crazy and really prevent me from living... Besides I watched my mom be affected by this, and always made a promise to never allow this to hurt me.. like I said I do have good and bad days but I have more good days! I always joke around and say I am the odd one, which is cool b/c I hate being like everyone else... Anyway keep us posted on this treatment... Peace and Light to you all

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  10. Did anyone else have any luck with Vitilax solution?

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  11. Please any one know about mktp in henry ford or any place in usa i want to treat my vitiligo by sergry thanx

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  12. HI, My Daughter had vitiligo on her lips and under her lips. i ve been using vitilax for her now for the past one year, both the tablet, oil and viti-nutrient tablet for repigmentation.
    I can testify that the one under her lips is almost covered back and the one on the lips are showing dark spots.
    I was made to understand that the tablet will first work from within to stop further attack before bringing the colour back.
    it takes time and being patience, but VITILAX works.

    Idowu, from Nigeria.

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  13. I had vitiligo for 8 years now and I had tried different treatments (PUVA, topical steroid, meladinine cream/solution with exposure to sunlight/PUVA, oral meladinine, oil of bergamot). The vitiligo covered my neck, and one-fourth of my face. I looked for another dermatologist because i lost hope with my past dermatologists. Then somebody recommended me a good natural treatment and it worked very well. Now i'm 90% cured. With only 1 1/2 month of treatment. Watch this review, it helped me a lot: www.naturalvitiligotreatmentsystems.com

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  14. hi Wissam, evening here, Im Anna, from mongolia, I've been struggling with vitiligo since 2009 i guess, its been a long time.I dind't know any about the vit cream or UVB lamp at that time and its killing me mentally as u mentioned before. Now I know how to use treatment at least, I have bought UVB lamp recently and don't know how to use. should i apply treatment oil or just let skin dry and start using lamp? and secondly when should i stop using lamp? after pink spot comes out? and then start using treatment oil?...give me some advice, thanks...Best regards Anna

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  15. So it looks like it's been a while since your first post. Have you had a lot of success with Xtrac? Is either Xtrac or Vitalix better than the other?

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