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Posted by Michael Manohar Lalchandani on July 3, 2012 at 4:31pm in Main

Hello everyone!

I'm new to the site and I'm not really sure where to begin. I've had Vitiligo since I was about 16 and its slowly spread on my hands. A couple random spots here and there too. My mother has it and great grandmother did too. Like many of you I went to a doctor and they said it was definitely Vitiligo but there was really nothing they could do. It's frustrating to have these spots that I know are there, but because it's my own body tend to not really notice until someone points them out very ignorantly and embarassingly and it's like, oh yeah...that again! I've seen other people with Vitiligo over the years but have never actually known anyone else. I want to make friends with others like me and be able to not feel judged for a change. All my friends and family say it doesn't bother them, which I'm sure it doesn't, but it still bothers me from time to time. And if you don't have it you just really don't understand. That said, I can't wait to talk to some new people and make friends! Feel free to hit me up!  =)

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Replies

  • James Davis September 30, 2013 at 3:40pm

    Mike, Your correct in your statement, if you don't have it, then you don't understand! period. I work with a bunch of guys that don't see my spots, or do a really great job in not showing they don't see them, I only had one encounter last week in which a guy commented on them, and he acted like he didn't know I had them, I truly wish I had a cure for these dalmation spots, but so far, no luck, so I am who I am. 

  • James September 27, 2013 at 5:33pm

    Hello Michael.  My doctor gave me the bad news at about the same age as when your's did.  I am VERY lucky to be one of the people that does not have a severe case, but that does not make it any less hard and I can relate to everything you have just said.

     

    I do want to mention/ask you...  Have you looked into a UVB light?  I have taken a few approaches with myself: 1. If there's no cure, what can I do to be cured without a cure?  2. Control it as much as possible.  3. Fill back where I did have it.  Again, I am one of the lucky ones as I have a very small case (which is why I don't have a picture on this site - nobody really knows given the success I've had using the UVB light).

     

    From your post it seems like you might have a smaller case.  If so, and if you think it is controllable, I would encourage you (and anyone else who reads this!) to look into UVB.  You may be able to get to the point of "cured without a cure" if you can find the right balance of what works for you (foods, vitamins, exercise, UVB light, creams, etc.).

    • Vani > James September 28, 2013 at 5:45am
      Hello James, do u mean NB UVB?
      I am considering to buy one. Do u recommend any brand?
      Thanks
      • James > Vani September 29, 2013 at 9:20am

        Yes, Narrow Band UVB.  I got mine from National Biological.  It might be tempting to go to somewhere like ebay.  There are a lot of fakes so I would not go that route.

         

        If you end up getting one, it is important that you work with your doctor and follow the instructions.  As well as it works, it is also very powerful and can burn you very easily.  You need to start out with very short periods of time and work your way up.

  • Marcela September 25, 2013 at 8:17am
    Omg I thought I was the only one who forgot they had vitiligo. Sometimes I look at my hands and think "it's barely noticeable", then somebody points it out and they bring me down to reality. I'm so happy I found this website! We are not alone
  • Cameron Longo September 19, 2013 at 7:40am

    Hi,

    Nice to meet you!

    Yes, it's a hard thing to struggle with! 

    Personality wise, I have no problem making friends.  Just romance wise, it's so much harder. 

     

    We can be friends Michael!

     

    Cameron

  • Catrina Rivera September 18, 2013 at 6:51pm

    I know how you feel...but I keep saying to myself at least it's not malignant or life threatening...That's what keeps me hopeful....

  • Jeff July 9, 2012 at 9:34am

    Welcome to the group Mike.  You found the right source for support.  There are a lot of people with vitiligo, but you wont notice them until you start looking.  It's like buying a car, and then the next thing you know, you see your car everywhere!

  • Tina July 9, 2012 at 9:04am

    Michael, welcome and thanks also for the friend invite!  You are not very far from me.....I also totally get where you are coming from, it's a way of life I think for us vitties.....not a fun one when it bothers US so much, but then if someone else does not have it, they don't really understand as much as they want to...This is a great forum!  Glad you're here..:)

  • MARITZA FERNANDEZ July 9, 2012 at 7:27am

    hi michael. i understand how you feel 100%. welcome to this site. we're all in this together. in this site, you will feel better, venting out or just sharing feelings. write to me, whenever you wish to chat.

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