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Vitiligo- my experience

Posted , 51 users are following.

anony76522
anony76522

I'm a 16 year old boy with vitiligo. I've had vitiligo since I was 11. It's been a difficult 5 years but my friends and family have pulled me through.

I know vitiligo isn't a life threatening disease, it doesn't affect my health but in this day and age- where society puts a lot of importance on looks, vitiligo is almost as bad.

Most of the pigments on my face have already dissipated and there are symmetrical patches across my body.

Early on, what I found most difficult was the little things like the looks that I got from people that passed by or the fact that people were so obviously avoiding the seat next to me on public transport probably thinking it's contagious or something. I don't blame them though, maybe i'd do the same if I was in their position. It wasn't long before I kind of stopped thinking about what others thought of me and focused on what I thought of myself. Still, this made my self-esteem very low and made me really insecure.

It was only recently that it started getting difficult again, I was getting older and was thinking about what the future had in store for me. Questions that I really never thought of started popping up.

The biggest one being: who'd want to marry me? Of all the people in the world, why would anyone choose me? When people look at me all they'd see is someone who's different, an abnormal person.

I'm not really sure what i'm trying to achieve by posting this, it's not a question, but perhaps there's someone I can talk to who can relate or has been through this.

I'll admit, It wasn't all bad, vitiligo, I feel has made me a better person. It definitely made me humble and appreciate things I otherwise might've taken for granted. Vitiligo has kind of opened my eyes- teaching me not to judge a book by its cover.

8 likes, 39 replies

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  • isabelle2207
    isabelle2207 anony76522

    Posted

    Hello, I'm a 17 year old girl and I have vitiligo too. I think I got my first pale patches when I was around 7, and I have more now. The doctor gave me creams and a bath soak but they were ineffective. I think for all of us it's just something we've got to live with.

    I know I'm lucky because my paler patches of skin can be hidden; they are over my joints mostly and the one over an eye is only visible in summer. In this way, you have my sympathy and I can't really understand what it's like for the condition to be obvious. 

    But I can empathise to an extent. I was never sporty but p.e became hell at secondary school when a new bunch of peers did not just take my unusual skin for granted. I would be asked why I was like that and whether it was infectious; whatever answer I gave there was some sniggering. It was only a few hours a week, but of course I saw the same people elsewhere.

    I also understand your fear aboutnot being wanted. I am always embarrassed by my knees and elbow, and I avoid swimming (which was my favoirite sport) desperately because of the revealing costumes, and when my boyfriend saw the largest patch on my hip I feared his reaction. He claims to like it and while I'm not sure I believe him, it hasn't seemed to effect our relationship.

    I feel sure that the right person will value and appreciate you beyond the superficial layer that is skin. I suppose it's little consolation now and doesn't help your anxiety. But I believe it will happen and people will, as you do, not judge a book by its cover. 

  • holly1998
    holly1998 anony76522

    Posted

    Hi, I'm not sure whether you will see this but..smile

    I'm a 15 year old girl from the Isle of Man and i would love to find someone around my age to talk to or relate to about vitiligo. My patches first started appearing when I was 8 and  was diagnosed at 11. I have vitiligo on my knees, ankles, back, shoudlers, hips and around my left eye. It's kinda symetrical. Growing up, I felt different from the other children around me because of my patches, but I never really let it get to me until a girl in my PE class asked was the mark on my back a birthmark.. and another time i got told "who'd go out with someone with a skin condition..you're never gonna get a boyfriend".

    When I reached around 13, I began wondering if there was any way of curing it or just covering it up. Me and my parents found 'The British Red Cross' and they gave me camouflage makeup to cover it up. Another time, my doctor gave me a orange coloured cream I was told to apply (i think twice a day) just to my back, to test it out and see if it made a difference. It actually stained the patch on my back orange.. It looks a bit like fake tan..  

    I dont use the camouflage makeup anymore, because I believe I am who I am and I shouldnt have to change that for anyone.

    Our condition makes us unique smile

    anyways, I just thought i'd share with you my story.

    Thanks for reading smile

    • tangoxo
      tangoxo holly1998

      Posted

      I'd love to be able to talk to you

      I'm 14 and I've had vitilgo for 10 years I went to the doctors when my family noticed a small white spot around my face it didn't bother me at the time but a few weeks later it grew a over my face it kinda looks like a superhero mask.I didn't like it the stares,being different I didn't know what I did to deserve this everyone else was normal and would always ask what's wrong.I started to use creams,Chinese medicine,Indian medicine,herbal remedies,light therapy it seemed everywhere i went they knew what it was but just didn't have the right explanation why it occured or cure.I'd get bullied at school in primary but one day in I remember someone told me that it looked cool and that they wished that could have it and be different and embrace it.Yh somedays I wish I didnt have it but I have learnt to love it because it's a part of me

  • MyNameIsJoshua
    MyNameIsJoshua anony76522

    Posted

    Hello I'm 19 Years old guy with Vitiligo on my eyebrow i have this since 11 years old it doesn't spread like what i saw on other patients but you know having vitiligo can really hit you hard on your self confidence sad , i want to cure my vitiligo before i graduate on my college degree so if any of you have cures or to do so i can cure our vitiligo i would be happy to try your methods
    • Sivakanthtej
      Sivakanthtej MyNameIsJoshua

      Posted

      Hi Friend

      If you are suffering from Vitiligo till now then you can try Verdura mela gain herbal cream which is very effective and helps to remove patches from your skin within some days.

  • untrammelled
    untrammelled anony76522

    Posted

    Your post is from seven months ago, but I wanted to reply to you as well as the other five people who did. 

    I'm thirteen years young, and I've had vitiligo since I was eleven, or maybe it was when I was ten, I don't really know. At first, when the vitiligo appeared on my right eyelid, I really didn't think much of it. It faded away after about two months, but reappeared; but this time bigger and more evident on both of my legs. 

    Looking back, I don't really remember if it'd just randomly developed overnight; and I've only had it for about two or three years now. Haha, I suppose I'm suffering short term memory loss as well. (No, not really. Sorry, that was a bad joke.) I remember one thing for sure though; I was terrified at the sight of the white, almost continental-shaped, patches. I cried a lot.

    Ever since then, I've always worn jeans to cover them up. (And sure, people do have it worse than me, but please, let me be selfish for just once and not feel too guilty. Please.) I've stopped swimming and somehow, I found myself always avoiding eye-contact. Yes, frankly, I became that shy girl, but not in a good way either.

    Social anxiety, depression and suicidal; who knew vitiligo could effect you in such a way? I mean, I've even lied and claimed that I was an asexual just to get distance away from people. I know. And, I regret it a bit, since I'm terribly lonely these days. I just wanted/want a friend as of now who will accept me, who knows how hard it is to cope with this weakness.

    So, I'd been researching, desperately to assure myself that it wasn't just me. And, I know that someone's rolling their eyes right now at my selfishness, and I'm terribly sorry for just ranting like this.

    And, when I found this site and your post, I was ecstatic yet saddened that someone else was affected as well. And, you seem so optimistic and frankly, I'm jealous, but at the same time, really happy for you.

    Right now, I'm coping terribly, but I'll always remember your post as an example to really admit to myself that I have vitiligo. Because, even though I've acknowledged it, I don't quite think I've really admitted it to myself. And, I think once I have, I'll be at least a bit, happier.

    Thank you.

  • anony76522
    anony76522

    Posted

    Just an update for those of you wondering about my current situation. I'd like to start off by apologising for such a late reply- I rarely ever use the site.I'd like to also thank everyone who has taken part in this discussion, its made me very happy reading some of these replies and finding out about all these different experiences. It's amazing how positive everyone is and I'm humbled to see such positive comments.

    I'm currently 17 years old, turning 18 in July. The past year has been quite hectic for me with my a-levels and some family issues. I'm now well into my second year in college and it won't be long before I head off to university(hopefully). I plan to leave London and experience life living in a city I'm unfamiliar with; to be honest I'm quite anxious but excited at the same time. Particularly looking forward to making a bunch of new friends. 

    With regards to my vitiligo; the thought of going to university and meeting new people has also made me start to feel insecure again and I became desperate to rid myself of my uneven skin colour once and for all. If I was going to move to a new city, I wanted a fresh start. I recently consulted a dermatologist again after quite a few years to discuss options I hadn't tried.

    He gave me two options: bleaching or UV-B light therapy.

    Bleaching was quickly ruled out as a significant amount of my body still had pigment remaining. It also became apparent that any hair in contact with the bleach would also lose its colour.

    I'm considering UV-B therapy but I postponed it to a later date, just until my exams are over as it is quite a strenuous process- having to visit the hospital often for the therapy.

    I have been feeling quite lonely and stressed out especially since a lot of my closest friends moved colleges and the fact that I hadn't done aswell as I needed to last year so I have my work cut out for me. But I find that having a clear goal to stride towards really helps. In my case that's doing well in my finals so that I can get into a good university. 

    I'd like to once again thank everyone that has taken part in this discussion. When I first submitted a post a year ago, I didn't expect much to follow. But reading all your responses has been uplifiting, especially since I can empathise with most of you. It has been great to have this site as a sort of outlet, and to have actual people who can truly understand my situation. 

    • vish66276
      vish66276 anony76522

      Posted

      Dear All,

      Briefly, I suffer from vitiligo, I've had it since the age of ~12 years. I am now reaching my 30's. 

      I had tried herbal remedies, steroid creams, etc. They don't work. I wouldn't say don't try them, remember, this is a disease that is classified as polygenetic with a poorly defined etiology.

      Also, don't pay hundreds of whatever currency you use for these scam artists treatments. Trust me, we've done this and lost out on thousands.

      Okay, so what has worked? Narrow band UVB treatment. Now, please understand the risks, the major one being skin cancer. There is a small chance of this, you will need to stay out of direct sunlight, use suncream, etc.

      This treatment won't work for everyone, but what if I told you I went from having 30-40% vitiligo to 2-3%. Now, it go rid of most of the vitiligo, some patches remained. Recently, the vitiligo has come back (after 4 years) - hence, it is a treatment, not a cure. However, I'm starting the treatment again soon. BTW, although it has come back, it is not as wide spread as before.

      How do you know that I'm being legitimate about this claim? Well, I didn't pay for it and I have nothing to gain, I live in the UK so I used it on the NHS. Hence, it should be available through a medical practitioner and not some money hungry fool. As far as I'm concerned, it's the only thing that works. It works best for people who have hair folicles with small melanocyte reservoirs still kicking around. These resevoirs appear to create larger patches of repigmentation around the hair folicles during treatment, resulting in a freckle like legions, these legion then get larger and if you're lucky, you have your skin back (for a while - or forever, you may, or may not relapse).

      Now, with respects to dealing with a life with vitiligo, you have to stay strong, let it inspire you, not destroy you. 

      All the best.

       

  • lisa32714
    lisa32714 anony76522

    Posted

    Hello, I see it's a while since your post. I'm a female in my 40s who has had vitiligo since my early 20s. I now have three sons, eldest is 19, who has just discovered he has vitiligo too. I must say I feel dreadful about it, I feel I've passed it onto him and as I know how it feels and can relate to what you said in your post and how it affects you, it's affected me too. It's taken my confidence away, I'm quite shy anyway, but I dread social events. I have vitiligo on my face which I cover but it's still noticeable, unless you have this condition and are living with it, nobody understands what it's like. I've accepted now this is my life I have to get on with it, but it's not easy. I don't want to keep asking my son how he feels about it I case it upsets him, but I want him to know I know how he feels. I think you have to allow yourself time to come to terms with vit and recognise we are normal human beings with feelings. I wish you well for the future
  • jeff42301
    jeff42301 anony76522

    Posted

    I feel exactly as u do with people lookig at me. My patches appear as if I have been burned and people ask me how I was burned so bad. I am so self-conscious about my body. I an a shorts and tank top personcandida I can't ware close like that anymore. My arms and legs look horrible and I use sunless taner to cover it. It's very hard to put sunless on my legs ass theu are hairy and it makes the lotion splotch and,causes uneven tan. I have had vitiligo sense I was 4 years old and,it started with 2 small patches on my right side at myour waste. Now 90% of my body has spots. It was dormant for 15 years and all of a sudden it spread like wild fire over one winter. I am what most say a good looking good guy and I hate looki.g at myself now in the mirror. I just wish so bad therery was something we coukd do to fix it. My self esteeme is totally gone now
    • jeff42301
      jeff42301

      Posted

      Sorry that post has type os and the word ass was not,suppose to be there. I tride to delete it. Very sorry
  • j16072
    j16072 anony76522

    Posted

    Hi!

    I was about 18 when I started to lose pigment on my face, just above my eyebrow. Over the years it spread, whitening my entire left eyebrow and much of the left side of my forehead. I felt very disheartened, embarrassed, ashamed. I was also painfully shy and usually felt like a complete outsider. I never belonged.

    This month I will turn 49. I am happily married, have two kids, lots of friends. And the vitiligo is slowly regressing. I have complete confidence that it will go away completely over time. But that really doesn't matter any more.

    What matters is that I have spent lots of time and energy and focus working on myself. I have learned that I am valuable. I have learned to love myself. I learned that I was sexually assaulted at age 7 and repressed it entirely. I have learned to be tolerant of my own mistakes. I have learned to forgive myself, my family, and the stranger who assaulted me. I have learned to want to participate in life instead of disappear from it.

    I have learned that I am simultaneously flawed and perfect, and that is the beauty of this thing called life.

    Love to all my Vitiligo Cousins,

    Julie

    P.S. The only "thing" I am using to help this change is homeopathy. I won't say what remedy I am taking, as remedies are highly individualized. If you are curious, I'd suggest having a consultation with an experienced traditional homeopath who uses consitutional remedies. This means they take into consideration your entire constitution when choosing a remedy, not just a single symptom or issue.

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