What does it feel like to have Vitiligo?

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My daughter was just diagnosed with Vitiligo based upon a small patch of due pigmentation on one of her shins.  She has been prescribed a topical steroid cream as her primary therapy.

I am stressed about this development and would like to hear answers from those who have vitiligo or are closely related to someone with this disease.  My hope is to learn in order to help my eleven year old daughter through this if it progresses.

  • 1995 – I was diagnosed with Vitiligo (I was 11 too). There were 2 small patches on my ankles. Within the next 5 years these had spread to knees, elbows, fingers and face. During this time I had tried allopathy, homeopathy and naturopathy treatments.
  • 2000 – Then I went to a well-known dermatologist, who recommended allopathic medicines, and with these there was an improvement, which resulted in fewer patches restricted to ankles and knees. This improvement lasted for about 2 years, after which I had to undergo a minor surgery which involved, scratching off the white skin in layers until a reddish layer of skin was encountered, and then healing the wounds with steroid based gels and creams, and on healing taking the PUVA (Psoralen plus ultraviolet A light) treatment. There was vast improvement, which again lasted for 2-3 years. Another session of skin surgery was done, but this time the situation deteriorated. Now there were patches on my shoulders too.
  • 2005 – I switched to Ayurvedic medicines. With these, there were no improvements but the spread of the white patches was slowed down to almost a halt.
  • Oct 2007 – I went back to allopathic medicines (a different dermatologist) as the ayurvedic medicines; though helpful, were horrific to taste and the diet constraints took a toll on me. For the next 2 years, with mild allopathic medicines the situation was controlled.
  • Feb 2009 – Due to relocation, I stopped medications for 3 months, and all hell broke loose. The white patches started to spread, and soon there were patches on my lower back  and legs.
  • April 2009 – Started with steroid based tablets and cream and PUVA, which helped a lot with the vitiligo, but worsened my health. I gained 20 kgs in 6 months without any change in diet, my feet and back would swell overnight without any cause, I couldn’t stand or walk for more than 10-15 minutes and I would fall sick at the drop of a hat. And I was only 25.
  • June 2010 – I stopped steroid medications. After 15 years I had made my peace with vitiligo. I didn’t care what color my skin was. I just wanted to stay healthy.
  • Today – My skin is bicolored in patches all over. I have a few patches on my face (easily hidden by smart makeup – a German doctor’s suggestion). I am happy.
    I do take medicines, but these are ayurvedic tablets and lotion. I have now become irregular in taking pills and tablets, as I have stopped caring.** The patches on the face never returned until 2012.

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When it all began, I was 11 and didn’t know how to react or do. I never hid anything from anyone. But I noticed changes in people’s behaviour. As Anonymous has rightly pointed out, there is a lot of social stigma towards vitiligo in our country. But over the years I have seen people evolving and accepting it more whole heartedly now.
My biggest strength have been my siblings, parents and friends. My parents are still not at peace with my vitiligo, as they feel that this is a hindrance in my happiness (and marriage of course). But my siblings and friends have always had a no-care attitude towards it. Not once have they asked me to discuss it or suggested ‘nuskhas‘ and Ramdev Babatreatments.

I had a real hard time , especially as a teen. I was not good to look at. I lost a lot of confidence. I have had many hurtful comments said to my face and behind my back. When I was 14, I had patches all over my face. I stopped going out for social functions or even to play or for walks. I gained a lot of weight as I took to comfort-eating. Teenagers can be cruel and I wasn’t just called names because of my vitiligo but also because I was fat. I went into a shell. I was always a shy, introverted kid and so it was easier for me to become invisible to the world. At home, I was this angry kid who hated god and the world. I couldn’t understand what I had done to be like this.

Then in my 10th grade, when my patches started to disappear I saw people looking at me differently. I started to lose weight, and by the time I was in college, I was back to my normal self. But by then I had achieved the uncanny eye for identifying people I can be with. I still can tell you on our first meeting whether I am going to like you or not. I can also, after a few interactions, tell whether you are a nice person altogether or not. I gained some really awesome friends over the years. I started to concentrate on my education and knowledge as I knew this one thing no one can take away from me. I became a bit calm, and a little more friendly.

All this while, my parents always pushed me academically as I was good in studies. Today I am at the best possible career position one can be. I have some truly awesome friends and a loving family, who are always on my side.

And that is what your daughter needs. Encourage her to build up on her strengths.
Everyone’s medical history and immune system is different. Maybe your daughter will be cured completely, but don’t let it be the sole focus of her and your life.

And just like Anonymous, given another chance to relive the past 19 years, I would choose vitiligo again.

source;http://www.quora.com/

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