Mike Mahler - Living With Vertiligo!

[webmaster]

A few years ago, I went on a ski trip with my family to Utah. I never would have thought that the trip would have such a profound effect on my life. Learn what vitiligo is and how it can effect you!

http://www.bodybuilding.com/fun/mahler24.htm

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[harlin]

Excellent article! My mother has this condition along her hairline of her forehead. She is 69 years old;so, she isn't as concerned about it.
But, you can replace the word "vitiligo" in your article with "burn scar", "pimple", "congenital birth defect",or whatever. The same feelings are evoked with that person. I truely feel that things happen for a reason, perhaps a lesson for our spiritual journey while we are here on Earth.
Anyways, the bright side (if that's what you want to call it) is that you are caucasion. Vitiligo has a sharp contrast with darker skin, and is much more noticable.

I also suffer from vitiligo and I have had PUVA treatment before the onset of my vitiligo and i strongly believe that the PUVA treatment caused or speeded up my vitiligo. Like you I am also fair skinned and have tried the make-up but as I have a large areas to cover over my chest, arms and legs it was not practical. I find the best thing to use is fake tan.

Vitiligo is a progressive disease and mine is slowly travelling from my chest up my neck in the direction of my face. I have been to a chinese herbalist who assures me that he can not cure vitiligo but using a herbal tea he can stop my vitiligo progressing at a cost of £30 per week for the tea.

I strongly believe that if people can't accept you with vitiligo then they are not worth knowing.

Good Luck,

Suesea2000

I also suffer from vertiligo, I have it on both my arms, legs, chest and accross my shoulders of my back. Do I care what other people think or say!! do I let it effect my everyday life!!! do I let it bother me in any way at all, the answer is NO, there is nothing that can be done to rectify it so I carry on as normal. I go too hot climates for my holidays and make sure that I have a high protection cream on all areas effected and just go out and get on with my life. People don't look and stare at me, if it comes up in conversation I explain what it is and nothing else is said.
The best way is too get on with your life and don't let it bother you as it certainley doesn't bother me.
Keep the faith.

I'm 16 years old im a young girl thats going crazy i cant live like this anymore its so hard to be so different i tryd everything its so hard to leiv in this world like this im so stressed i need help anything that can cover this i have no idea what this is and i dont know why i got this no familly had it God help me i have a boyfriend that really loves me but i keep this secret from him i cover it mith fake tans and i hate it i cant tell him im to scared he would live me HelP

I also was burned sunbathing with baby oil on my hands, legs and arms. I really, really, hate vitiligo. But, I do try to cover it with dermablend and other cover ups. I have also learned to live with it. But I do hide it as best as I can. I do get very embarrassed when people grab my hands and say what is that. Were you burned in a fire! Oh well, I have 3 lovely children with no signs of vitiligo. And if for anything, I have stayed out of the sun for the last 14 years and do not have as many wrinkles as people my age!

Originally Posted by Lili

I'm 16 years old im a young girl thats going crazy i cant live like this anymore its so hard to be so different i tryd everything its so hard to leiv in this world like this im so stressed i need help anything that can cover this i have no idea what this is and i dont know why i got this no familly had it God help me i have a boyfriend that really loves me but i keep this secret from him i cover it mith fake tans and i hate it i cant tell him im to scared he would live me HelP

How about dermablend

Originally Posted by webmaster

A few years ago, I went on a ski trip with my family to Utah. I never would have thought that the trip would have such a profound effect on my life. Learn what vertiligo is and how it can effect you!

http://www.bodybuilding.com/fun/mahler24.htm

HOW TO REVIEW: Post Your Review Of This Article - CLICK ON POST REPLY BELOW! You do NOT need to be a registered member to post a reply in this section!

My son is 15 years old and 6'3" tall loves to play basketball. He doesn't play much now because his condition has gotten worse, I am not sure if he stays in because of the sun or because of his self-esteem. I need some feed back on teenagers his age dealing with this condition that I could possibly pass on to him. Mslilmama1@aol.com. Thanks!

I always thought that when I was young that nothing could be worse then alopecia (Hair loss), especially being a female. But at 16 Vertiligo changed my reality. It drives me crazy most of the time. But it is my experience that it really doesn't matter. I had a tough time in high school (but who cares about those fools-- it could of just been my insecurities also), but in college NO ONE cared. After college NO ONE cared. Mostly, they are curious about it because they have seen people with it but never knew what it was. I don't let it get to me anymore. I am 27 and finally having my first baby, I was always afraid to pass this on. But now I realize that I didn't have anyone to talk to about the problem, but if I did pass it on- they'll have me to talk to, and I'll make sure it is the last thing on their minds.
My wish is that a tv personality that has it would share the disease with the public. I often wonder why doesn't any actors or actress have these problems??? If one of them could speak out - It would be easier to talk to children about it. It wouldn't be so shocking to see.

U are 100% right!

If a actor or actress share there story about vitiligo then it would make it soooo easy. Why cant they do a special tv program on it.

I know vitiligo isnt a life threatening case nor it is like cancer but still everyone one who has vitiligo should be treated and taked care as any other cause.

It doesnt kill u, but seriously it kills u more by hurting your feeling. No one will undetstand, datz wat i say everyday, but anywayz I hope oneday all of us will be normal! Well we are normal but just have different skin colour to everyone else!

Originally Posted by Unregistered

I always thought that when I was young that nothing could be worse then alopecia (Hair loss), especially being a female. But at 16 Vertiligo changed my reality. It drives me crazy most of the time. But it is my experience that it really doesn't matter. I had a tough time in high school (but who cares about those fools-- it could of just been my insecurities also), but in college NO ONE cared. After college NO ONE cared. Mostly, they are curious about it because they have seen people with it but never knew what it was. I don't let it get to me anymore. I am 27 and finally having my first baby, I was always afraid to pass this on. But now I realize that I didn't have anyone to talk to about the problem, but if I did pass it on- they'll have me to talk to, and I'll make sure it is the last thing on their minds.
My wish is that a tv personality that has it would share the disease with the public. I often wonder why doesn't any actors or actress have these problems??? If one of them could speak out - It would be easier to talk to children about it. It wouldn't be so shocking to see.

Has any one tried Glyconutrients? Its helped me and my 4 year old son heal. Its been a slow progress (5 months) but its worth it because I can see our skin turning back to its original color. It builds up your immune system and works on a cellular level. I'm glad I found this product. I've personally seen the results on myself. I would love to share it with anyone. Just email me at haka_mai@yahoo.com.

Yes I have Virtiligo too, arms, breasts, etc for 20yrs. The worst part is when people say "it does'nt matter" IT DOES MATTER........to me, I know I'm special because I'm not black or white or brown....... I'm ME..... especially in a world where you are identified by what you look like, we the Vitiligans have an identity as specific to us as stripes on a zebra....I am me, I am a Virtiligan

Hello to all.my daughter was diagnosed with vertiligo at the age of 7 she has it on her knees,elbows.eyelids and on her chin.she has been put threw alot of mental issues dealing with other classmates and of coarse the bullies thats gotta give everyone a name like damaltion.its mainly noticeable in the summer when she starts to tan.I have learned the reason we don't see it in our family is because it skips generations.shes the only one that has it on either side of our families.I know its gotta be a hard road to travel with markings on your body.but we have to keep in mind theres always someone or some other disease thats worse than this,lets hope for a cure oneday..

I got it when I was about 30. Genetic, my dad had it. Mine started after extreme stress from racing. Stopped the racing, took some trisoralen and PUVA and partially recovered some of the depigmented areas. Started on elbows and around the hips. It hasn't spread any in almost 30 years. From what I've experienced if the hairs have not turned white the trisoralen and PUVA works. If it's white forget it. All you can do is cover it up with tanning products, stay out of the sun completely, or completely depigment yourself. I've heard that NIH at one time was extracting the melanocytes from active areas with needles and injecting them back into depigmentated areas. They had some success. Sort of like a hair transplant. But there are lots of people who have it. The darker your complexion the more noticible it is. I stay out of the sun and the areas around my elbows aren't even noticible. I sympathize with those who have it on their face. It's hard to hide. People probably thinks it's leprosy or something similar. Can't remember the name of the substance that you use to depigment yourself. But if you were to get some and maybe put it in their shampoo along with some Nair maybe their biases would disappear about it once it happened to them. Now that's a real dirty trick.

I believe Hypnosis can help with this sort of condition as it's about the body attacking itself.

It's similar to an allergy in that the body attacks a false threat. Allergies can be removed with hypnotherapy.

A good hypnotherapist should be able to help.

Also, instead of focusing on that tiny bit of white, look at how much of your original colour skin there is. Focus on what's good or you'll fuel the negative.

All of you:

Please re-visit your doctors and ask if you are a candidate for using Elidel or Protopic for your vitiligo. These are immuno-modulators that stop the T-cells from killing your melanocytes. I have been using Elidel for 9 months, and my vitiligo has improved CONSIDERABLY. You have to be very consistent and apply it twice a day. It's greasy and it's time-consuming, and you have to be extremely patient for the results to appear -- it's not overnight! But it works! Thank God, it really works!

WHen you use it, you also have to get very measured sun to stimulate the melanocytes. But you have to be extremely careful and not get too much sun -- max 10 minutes a couple times per week - I'm very serious, because although you need a little sun stimulation to repigment, at the same time, these drugs make you more prone to skin cancer if you get sunburned. I live in Seattle, so over the winter months when it was so dark here, I didn't repigment. But once we had some sunshine and I got 10 minutes twice per week, presto, the white areas started filling in. The repigmentation comes from your hair follicles and from the edges of the white lesions where there are melanocytes. It's incredible, and it's given me so much hope. I repeat, do not get more than 10 minutes of sun twice a week when you're using these medications.

PLEASE see your doctors. It's painful for me to read these stories and to know that I'm having so much success with Elidel. Elidel is easier to use than Protopic because it's a cream (slightly greasy) versus Protopic is based in mineral oil and petroleum which is very greasy and gooey! Protopic also gave me headaches and sinus congestion -- it's stronger I think. (Both of them have the same basic medicinal action supressing your immune system). I prefer Elidel.

BTW, I'm a 46 year old woman, and had vitiligo for a year and a half before I started treatment. It was severe on my arms, shoulders, and hands. It was also obvious all over my torso and shins. The doctor wasn't sure I would repigment, probably because of my age, but I'm doing great! Your success might depend on how long you've had vitiligo and the size of your unpigmented areas. The regimen of applying the medication is boring, and it's really tough to feel a little greasy all the time. It messes up your clothes and your sheets too, and complicates your love life. But it's all worth it. My skin will soon be repigmented.

PLEASE see your doctors and get the help you deserve. You can have normal skin again. There is HOPE.

i try to live with disorder but it is very hard i am scared to passit on to my familie i have over40% of my body i dont know what too do

i try to be happy and think every thing is goin too be ok and say i am pretty n-e way and say to my self i dont care what any one else thinks but once i get out side it totally changes when im in the car i dont even want to look at the car beside me.

because people look at me and wisper and i know what they are tlken about and people might say o your pretty nothing is wrong with you but they dont know what it feels like to walk out in to the street and have every one staring at you it really hurts.

they always do spiecals on makeup why not this we need help to

i have had vitiligo since the day i was born, if ANYONE KNOWS HARD TIMES with vitiligo it would be those who had to suffer the antagonizing of children and growing up with being so different from other children and not being able to explain to them what it is.
As an adult i would hope we aren't all that petty. i have come to terms with my vitiligo, am I happy I have it? well of course not, but I don't have cancer, I haven't been diagnosed with Diabetes or any other debilitating disease, Vitiligo is not hurting me in any way and I thank God for my health everyday. So I have white spots on my body and there isn't much i can do about it, who the hell cares? My life is much too important to me to be concerned with Vitiligo.