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Where are you VitiligoFriends?

Posted by Cenk Celik on March 2, 2016 at 5:07pm in Main

I have signed up to this website with many hopes; however, I am now disappointed. The idea of establishing a network to share experiences is cool but I have realised that this network is not as active as it should to be. For those who think like me, I am volunteer to spearhead of website to keep it active. Here you go:

I have vitiligo in both of my eyelids. I had taken narrow band UV application (so-called B-clear) for more than one year with ABC+Selenium vitamin pills. All I can say is that the light therapy worked for my left eyelid whereas there is no apparent change in my right eyelid. Then I stopped the treatment because of the high costs. Now, I'm thinking of taking Recouleur vitamins. Does anyone have any experience with that?

Dear VitiligoFriends, please be socially active ;)

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Replies

  • Grace July 3, 2016 at 12:48pm
    God I hope so I have had this for 20 years I didn't know what it was at first it took me a long time to accept this I hope and pray one day there will be a cure..
  • Evangeline July 2, 2016 at 6:05pm
    I think that there are a variety of causes for vitiligo, in my case, the autoimmune condition is genetic and I no treatments worked for me. It's now widespread enough to accept in a different way. I just protect from the sun and exfoliate daily and that presents a more even skin tone. However I think the longer one lives with it the easier it is to accept as a part of you. It's nothing to be ashamed of :) but I'm always happy to hear of success stories through treatment and hopefully one day there will be a cure for the underlying autoimmune response.
  • Grace June 25, 2016 at 4:11pm
    I heard that having thyroid problems can be somewhat the cause of Vitiligo have you heard of that?
    • Grace > Grace July 3, 2016 at 12:41pm
      Well I was reading some comments and people were saying having thyroid problems could be somewhat of the vit or stress or not eating rite Idk nobody in my family on both sides have it maybe its stress.
  • Alexander Quin April 9, 2016 at 2:59pm
    It's pretty active. It's longevity is testament to its use.
  • Laoise B April 6, 2016 at 9:52am

    I agree with you! I signed up to this website a week ago because in Ireland there is zero support, I have never even seen or met anyone else with Vitiligo! i have vitiligo on my back, arms, legs and just recently my eyes(panda eyes!) looking for tips and support from other sufferers. i have a consultant appointment in a few weeks for the possibility of getting UV treatment.

    I feel there is active members here maybe I just thought it would be different but its great as there is NOTHING in Ireland:)

  • John Amaral April 5, 2016 at 7:17am

    Yes! I was on that treatment but I used a cream phenylelanine

  • nadira March 18, 2016 at 3:56am
    Hello friends
  • chris March 15, 2016 at 4:22pm

    I was diagnosed with vitiligo 10 years ago.I have only had few spots on hip (major spot, this was first spot) and 1 medium size spot on my chest and 2 on lip and 1 on nipple. Up on doctors suggestion I have purchased UV device (hand held one) of my own and started using it. I got the re-pigmentation on my hip ( major spot) and chest, but I have did not see any result on lip and nipple. I went to see dermatologist and they said that I got re-pigmentation on my hip and chest because those are hair growing parts and those spots get quick response with UV therapy(only if you take try to treat them in initial stage itself). But I DID NOT SEE ANY RE-PIGMENTATION ON MY LIP, that because they are not hair growing parts and they repose to UV therapy was not improvable. So my dermatologist suggested me to use "Tacrolimus" ointment, after using this for more than 2 months I did not see any improvement. Hope my experience is any use to you, if not we can only hope for cure.

  • Purushottam kumar March 6, 2016 at 5:09am

    dear celik,

    I dont have any experience of that therapy but you can use IMOGRAF FORTE ointment, It will deliver good result

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