Comments

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  Lena Johnson May 17, 2016 at 2:55am

  Hello BJ, my name is Lena.  I have initiated a campaign, "Redefining Beauty" since the definition for beauty is so narrow. I have launched a handbag line "INVINCIBLE" that will feature people like yourself who embody strength, courage and confidence while facing adversities. I would like for you and your mom to check out my three topics that start with "Redefining Beauty", "Redefining Beauty - A Paradigm Shift" and The fashion show photos on the forum.  After reading the write up, I really hope that you will be interested in joining the project.  This is not an attempt to exploit or garner sympathy or empathy, but to spread awareness, address bullying, educate, share wonderful stories in your own words and uplift others.  Please let me know if you and your mom have any questions.  I would love to see your pretty face on one of the handbags. 
  Thanks Lena
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  Lena Johnson May 9, 2016 at 2:29am

  Hello BJ, my name is Lena.  I have initiated a campaign, "Redefining Beauty" since the definition for beauty is so narrow. I have launched a handbag line "INVINCIBLE" that will feature people like yourself who embody strength, courage and confidence while facing adversities. I would like for you and your mom to check out my two topics that start with "Redefining Beauty" on the forum.  After reading the write up, I really hope that you will be interested in joining the team.  This is not an attempt to exploit or garner sympathy or empathy, but to spread awareness, address bullying, educate, share wonderful stories in your own words and uplift others.  Please let me know if you and your mom have any questions.  I would love to see your pretty face on one of the handbags. 
  Thanks Lena
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  MARIA ELENA GONZALEZ April 29, 2015 at 4:40am

  Hi,

  Your daughter is beautiful! I have a daughter who has vitiligo since age 5, now she is 14. She is very confident and she has learn to deal with it, and I thank that God nothing is stopping her from living her life. She has been under UVB light treatments for years, on and off and the visits to the dermatologist office has been such a burden for her, I would like to get a home light box. Do you need a prescription from your dermatologist? Do they teach how to use it? what is the cost of a home unit? Do you go by time or by the strength of the light? It will be great to get some info from you. Thank you so much in advance
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  Cheryl July 12, 2013 at 3:53pm

  Hi BJ, one of your posts said your daughter takes homeopathic vitamins. My son takes vitamin c. Could you let me know what vitamins your daughter is taking? Do you think it is making a difference?
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  Kurtis Gustafson October 23, 2012 at 4:10am

  I have ahd Vit for about 3 years.

  I tried protopic and had little success. 

  I recently (about 3 moths ago) tried Elidel and have been seeing pretty good sucess.

  Good luck!
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  Mass mama August 28, 2012 at 2:20pm

  Btw...do you notice so many people now with this? I did all summer. Even several kids! I swear it's way more common than is even reported...
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  Mass mama August 28, 2012 at 2:17pm

  You know, I feel like I'm walking a fine line with the thing. I feel like the more attention I pay to it, the more self conscious she gets. So I guess my philosophy is don't make it a problem until it's a problem. Right now it's really not a problem for her so I feel like I'd like to give her as many days of just being a normal kid as possible. I keep an eye on it, keep looking for anything else popping up, but as long as I don't see anything I'm letting it go, as the doctors suggested. She eats really well anyway. I feel like altering her diet at this point would be depriving her of some of the things about bring a kid that are fun without really having evidence it will help anything. I did put her on a multivitamin this summer, and she gets plenty of sunlight, although I am really careful about sunscreening her. What you described with your girl is my greatest fear with this, but I do feel like watchful waiting is best right now. If and when I get to the point where she needs treatment I will get her someone who specializes in treating vit, and not just another dermatologist. I should also mention her bloodwork is all fine, thyroid, b vit, iron, etc. They will keep watch on it yearly to make sure it stays that way. Sorry this is long winded! I don't want tv at night, I read!
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  Mass mama August 28, 2012 at 1:58pm

  No, both dermatologists we saw said to take the wait and see approach. Right now it's really barely visible. She is very fair skinned and has two spots, one on the back of her leg about the size of a quarter, and the other runs down the side of her neck, on the same side. I think both of the spots got a little bigger this summer, but it's hard to tell because she is also growing, so of course they are bigger...what's weird is I almost feel like both spots either got a little darker or at the very least they didn't lose any more pigment so I almost feel like they are less noticeable than they were last August....I don't know. It's weird to me that this is an autoimmune disease and we see skin specialists for it. Seems to me we should be seeing doctors who deal with autoimmune disease. The first dermatologist we saw had so much advertising in her office for all kinds of cosmetic treatments, like Botox, restilin, etc, that it totally turned me off.
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  Mass mama August 25, 2012 at 3:14pm

  My little girl is 6 and has had it since she was about 2 :(. It's hard...you want to make everything right for them and you can't. My daughter never wants to wear her hair up anymore, I think because of the vit patch on her neck. It makes me so sad.
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  gene durocher August 20, 2012 at 10:05am

  Hi BJ,,, My son Pete is 11 also and has had vit. since he was @ 7...he is going into the 6th grade..