I am a Vitiligo Victim

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: BUT BEFORE I TELL YOU MY STORY, I WOULD LOVE TO HEAR FROM YOU PERSONALLY BY WRITING TO ME AT ESMT612@AOL.COM. I WANT TO INTERACT WITH OTHER VITILIGO SUFFERS AND TRY TO HELP EACH OTHER!!!
PLEASE WRITE ME!!!

Now here is 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.
Vitiligo can aso be a warning sign for future autoimmune conditions, such as thyroid or diabetes or several other autoimmune diseases. Also BE SURE to educate yourself on these other autoimmune diseases! Its important to take your own health into your hands and educate yourself! Be sure to keep an eye on your health and be checked periodically by your physician on a regular basis. A good dermatologist is your best friend at this point!
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.

Recent news!!!! read on........

Rep. Patrick J. Kennedy (D-RI) introduced The Prevention, Awareness, and Research of Autoimmune Diseases Act of 2008 (H.R. 7078) on September 25, 2008!!

The bill will increase public awareness of and research on autoimmune diseases in order to help patients get diagnosed more quickly and receive proper treatment as soon as possible. Research on environmental triggers of autoimmune diseases, such as heavy metals, phthalates, and pharmaceuticals is also included. The bill also calls for educational grants to health care providers on potential links between autoimmune diseases and cognitive and mood disorders such as depression.
It is important that we build support of H.R. 7078.
Please contact your House Representatives and ask them to cosponsor this bill.
United States House of Representatives - http://www.house.gov/writerep/
H.R.7078
Title: To increase awareness of and research on autoimmune diseases, which are a major women's health problem, affect as many as 23.5 million Americans, and encompass more than 100 interrelated diseases, such as lupus, multiple sclerosis, rheumatoid arthritis, Sjogren's syndrome, polymyositis, pemphigus, myasthenia gravis, Wegener's granulomatosis, psoriasis, celiac disease, autoimmune platelet disorders, scleroderma, alopecia areata, vitiligo, autoimmune thyroid disease, and sarcoidosis, and for other purposes.
PDF Version of the Bill

Let's all FIGHT TOGETHER!!!!!

ok, BACK TO MY PERSONAL FIGHT......

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 http://www.nvfi.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 permanent 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!

Ok, I have been on the pills another 4 bottles and I am seeing some improvement, but I think it may be from the laser treatments. I would hate to recommend such an expense if it doesn't really work. I am going to write the doctor at Merry Clinic and see what she has to say about her herbal treatment. I'll keep you posted!

I am now on my 3rd round of laser treatments, the 1st round aproved by the insurance company was for 30 treatments. I have 2 treatments a week, without fail! There was alot of redness( it's like a sunburn) and when the sunburn goes away there is a little spot of pigment! This is exciting, but you MUST HAVE PATIENCE!! To get burned all over and show a tiny spot of pigment, I've never been a patient person...and wow ! this takes patience!!!!!

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) , but I can sympaththize with those who do have it on the face.

Once again, PLEASE contact me for support, I do alot of research, but I have Vitiligo, so most importantly...I CAN RELATE!!!!!!!!!

It is getting hot here again already in Florida and I am LOADED with red round burn spots all over my body! Oh great....I have to really wear long sleeves and pants now, my skin is looking worse before it hopefull gets better.. I can see the improvement, but it is a LONG drawn out process!! I mean for me, it will be another year maybe. Twice a week I get fried by a laser and when the burn goes away, a little spot of pigment is there! It will be quite awhile before we can connect the dots.

I'll post photo's of my skin as it looks after the laser treatment. It's NOT a pretty site!

Stay tuned....

I am slowly but surely repigmenting!!! This laser is the best thing they have come up with! It is a painful sunburn, but that is the only way to bring out the "reservoir" of pigment we have way down deep. NOT all dermatologists have this laser treatment available, so you'll need to ask around. My dermatologist also has worked with insurance companies for several years now and has "convinced" them that the laser is a good treatment for vitiligo. SO, if you find a doctor with the laser but they will not take your insurance....keep looking. They're out there now! Keep looking!!!

I'll be back!