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Vitiligo Venting Room

Posted by Jeff on April 19, 2011 at 9:51am

I know I'm not the only one frustrated over Vitiligo.

Here is my page dedicated to venting over our condition.

Please feel free say how you feel.

 

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Replies

  • Ronald Piscitello May 17, 2012 at 9:56am

    Well, I have tried every treatment so far, other than the Excimer Laser. Nothing made the Vitiligo better.  Now off creams and steroids for over six months and the Vitiligo is spreading like wildfire.  With the Sun getting brighter, my skin tone is making the Vitiligo stand out even more.  This really stinks...

  • Gia May 9, 2012 at 5:12am
    Venting is not where I live. My hope for this discussion is that it breeds compassion and that what we say does not linger. If we don't let it out, we run the risk of exploding on someone, or letting the frustrations leak out. Vent it out. Go back to your life ready to take on the world again.

    Oh, and the national vitiligo foundation....you could seriously improve in providing support and helpful resources. International vitiligo day won't have as big of an impact as local support groups. Did you really have the nerve to say that you"partnered"with vitiligofriends and redirect me to the CA group on here? That's ballsy. You suck at supporting people with vitiligo so you essentially turn them away. You should be ashamed.
    • Jeff > Gia May 10, 2012 at 7:07am

      ^Ditto^

  • Gia May 9, 2012 at 4:54am
    I actually hate when people say we are healthy. I don't feel healthy. I feel like somethings wrong. A friend of mine cringed and said, "Is there another word you could use besides disease?" I don't want to worry about making people in my life more comfortable. Its a chronic illness...just support me.
    • Ananka > Gia May 9, 2012 at 10:21am

      "Like"

  • Gia May 9, 2012 at 4:46am
    I am pissed and heart broken that 3 days after I had an attitude shift and started liking the way my vitiligo looked (with the disclaimer that I am good as long as its not on my face)...it shows up on my face! I really wanted that one. Ouch.
  • Gia May 9, 2012 at 4:42am
    Seriously? Alopecia AND Vitiligo? Universe, I could punch you in the face right now.
  • Gia May 9, 2012 at 4:41am
    Some good old healthy What The F***! I can get behind that. Sometimes we need to just get it out. I am angry that after 2 months of 3x/wk UVB at the doctors and steroid cream, my vitiligo is worse than ever and still spreading. I hate that my dermatologist left without notifying me and now I will be assigned someone new who may or may not have a real understanding of vitiligo.
  • Jeff May 8, 2012 at 4:02pm

    I hate that Microsoft thinks "Vitiligo" is spelled wrong, and I have to keep adding the word to their dictionary.

  • Jeff May 8, 2012 at 4:00pm

    I hate that there is a National Vitiligo Foundation, and they have never reached out to me on this site.  

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