Twinmom Posted August 9, 2010 Share Posted August 9, 2010 Last night, I posted a long message on the special needs board about my DD11, who was just diagnosed with vitiligo, a skin condition in which the body attacks its own melanin. This results in white patches that can progressively grow larger and is generally considered a life-long condition (Michael Jackson apparently had a universal form of this disease). I won't go through the whole thing again here...I am getting a handle on my feelings of grief for DD and now just want to move on to learning more about how to handle this disease. Can anyone who has vitiligo or knows someone with vitiligo tell me what has worked for you/them? What medical options have had success and to what degree? What about costs? What cosmetics have worked? DD is Hispanic, if that makes a difference in any of your answers (particularly cosmetics, I'm thinking...) What about the social implications? DD has it on her face, so I am particularly worried about this...going into the tough teenage years, I hate to see her self-image suffer any more blows than have already been caused by her other special needs. Thanks for any answers/advice you all can offer! Quote Link to comment Share on other sites More sharing options...
melissel Posted August 9, 2010 Share Posted August 9, 2010 I'm sorry, I have no advice, but I couldn't read without sending :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
lisamarie Posted August 9, 2010 Share Posted August 9, 2010 I do have a friend with it who is a darker greek lady and she successfully covers it up with makeup that is specifically made for people with this. I don't even notice it anymore when just a few years ago it was very splotchy. I am not sure how I would ask her what she uses without it embarrassing her, but if I get a chance, I will. Quote Link to comment Share on other sites More sharing options...
Jennifer in MI Posted August 9, 2010 Share Posted August 9, 2010 :grouphug::grouphug::grouphug: I don't know much about it, but last year I saw a special on a Detroit newscaster who has this disease. I never would've known if I hadn't seen the special. Here's a link to his story. http://www.positivedetroit.net/2009/11/vitiligo-bonds-michael-jackson-and.html Do another search for the video. It might be a positive story for your dd (and you!). Quote Link to comment Share on other sites More sharing options...
peachskittles Posted August 9, 2010 Share Posted August 9, 2010 My son most likely has vitiligo as well (the doctor thinks he is too young for an official diagnosis). I know I read somewhere that there is a better chance of certain auto-immune disorders if you have vitiligo. (Google is my friend and my enemy, I swear.) Weirdly enough, after finding out about it, a guy started working at my SO's plant with vitiligo. He used to live in California, but had to move due to the job market. His job was in construction and exposure to the sun on those areas without proper protection (and repeat protection throughout the day) could cause serious burns. My SO asked him some questions about it but pretty much his family just adapted to him having it. Ok that was a bunch of rambling but it was the first thing to come to mind. I hope you can find some information to help your daughter out. :grouphug: Quote Link to comment Share on other sites More sharing options...
VinNY Posted August 9, 2010 Share Posted August 9, 2010 (edited) Dermablend is a great product for cosmetic coverage. Edited August 9, 2010 by VinNY left out a word Quote Link to comment Share on other sites More sharing options...
abreakfromlife Posted August 9, 2010 Share Posted August 9, 2010 my mom has had it since she was 4. It's just something we are used to. She said she did get made fun of in school, but she had a very dysfunctional family and got made of for everything, so I don't know that it affected it that much. I went to high school with a very popular girl who had it, and no one made fun of her. The only thing my mom has to be careful of is the sun. She gets sunburned really easily on the white spots. But the girl in my h.s. went tanning, go figure. Which actually made her white spots stand out even more. But my mom never had to be on special medicine or anything like that. I know it seems distressing, but it's really just a superficial issue, and I'm glad she wasn't diagnosed with something really serious. :grouphug: Quote Link to comment Share on other sites More sharing options...
SandBeach Posted August 9, 2010 Share Posted August 9, 2010 My son has vitiligo on his forehead. I was really worried about it spreading and it hasn't. He has one stripe on one his forehead and I just keep his hair a little long in the front. His vitiligo appeared after a week long daily swim lessons. I don't know if the chlorine was a trigger or not, but now I am extra careful to have him get the chlorine off of him as soon as possible after swimming. He's not bothered at all about his patch. I investigated treatment options early on, but since it doesn't bother him, we chose not to treat. Sandy Quote Link to comment Share on other sites More sharing options...
plansrme Posted August 9, 2010 Share Posted August 9, 2010 I know it seems distressing, but it's really just a superficial issue, and I'm glad she wasn't diagnosed with something really serious. :grouphug: I'm going to go out on a limb here and suggest that this is probably not very comforting. Of course it could be worse. Whatever your problem, it could always be worse. But comments like this do nothing but make light of the grief the OP feels for her daughter. I am sorry this happened to you and your daughter. I never read the special needs board, but I saw your post last night, and my heart broke for both of you. It's "just" skin, but appearances are important. I thought once that my then-2 yo had alopecia, and I came unglued. We adopted her at 15 mos. from China, and she came to us with a host of issues, all of which I took in stride. But the thought of her losing all of her hair sent me over the edge. I begged the ped. to see us RIGHT THEN and was most annoyed that she wouldn't. Somehow, she didn't see it as the emergency that I did. I kept thinking, "But it's hair; it's important." I know that's no help, but I just wanted you to know that I felt for you when I read your post. Terri Quote Link to comment Share on other sites More sharing options...
Crissy Posted August 9, 2010 Share Posted August 9, 2010 (edited) You may not be ready for this sort of thing just yet, but when you've had time to process the diagnosis and your feelings about it, you may want to read about Lee Thomas. He is a newscaster in Detroit who has vitiligo. I watched a television story about him some time ago, and I have never forgotten him. He is such an inspirational man. He does a fair amount of public speaking now, and has also written a book about his trials. He wants people to understand the condition better, and to help those who have it deal with the psychological aspects of vitiligo. :grouphug: ETA: Oh, look! Jennifer already shared about Mr. Thomas. :) Edited August 9, 2010 by Crissy Quote Link to comment Share on other sites More sharing options...
Twinmom Posted August 9, 2010 Author Share Posted August 9, 2010 I know that's no help, but I just wanted you to know that I felt for you when I read your post. Thanks so much for understanding. It's a complicated issue for DD even beyond the vitiligo, which isn't easy to understand if you'd not read the original post on the SN board. Since you did and since you also have adopted a child with SN, you get the whole picture quickly! It's nice to have someone really understand what we are going through here. For the poster who said it was a superficial issue, I'm fine with that and I understand what you meant. Thankfully, it is literally a "skin-deep" illness and not something more serious...knowing that is a comfort. However, combined with DD's other issues, I am struggling with overall grief for her and just don't want her to suffer any more than she already has to...that's where the rub is for me. :crying: Trying hard to trust God with this one! He's been faithful so far in her life and I'm sure He will be with this one as well. To the Dermablend poster...that looks like a great option! I've no problem with her starting with some sort of makeup like that at 11 if it makes her feel better about herself, provided that we don't quickly move on to other things! Has anyone had experience with UV treatments? I've read that in many cases you can get a 90% return of pigment on the face. That would be awesome and would go a long way towards helping with her self-image. We are trying a corticosteriod at the moment with minimal success 2 weeks into tx. Quote Link to comment Share on other sites More sharing options...
Twinmom Posted August 9, 2010 Author Share Posted August 9, 2010 Definitely going to read about Lee Thomas...the best antidote for grief for me besides faith is usually to immerse myself in good information! Got to help her deal, no matter what. Quote Link to comment Share on other sites More sharing options...
abreakfromlife Posted August 9, 2010 Share Posted August 9, 2010 However, combined with DD's other issues, I am struggling with overall grief for her and just don't want her to suffer any more than she already has to...that's where the rub is for me. I just went and read your original post...should have done that first. Double :grouphug::grouphug::grouphug: that is really hard to have happen on top of everything else. I hope she can find some really good friends who can build her up and like her for who she is in spite of everything. Watching our kids suffer is so hard! Quote Link to comment Share on other sites More sharing options...
Twinmom Posted August 9, 2010 Author Share Posted August 9, 2010 Thanks, Sally! :D Bump for one more shot at the evening crowd...anyone know anything about UV treatments? Quote Link to comment Share on other sites More sharing options...
AK_Mom4 Posted August 9, 2010 Share Posted August 9, 2010 DD16's best friend has vitiligo. A little on her face and lots of large patches on legs and torso. Lest year they started the UV treatments and the patches on her face are no longer noticable (you used to be able to see them even with makeup) and the patches on the legs are much improved. I would say it's worth investigating the light treatments, though DD's friend says they don't work for everyone. Quote Link to comment Share on other sites More sharing options...
Twinmom Posted August 9, 2010 Author Share Posted August 9, 2010 DD16's best friend has vitiligo. A little on her face and lots of large patches on legs and torso. Lest year they started the UV treatments and the patches on her face are no longer noticable (you used to be able to see them even with makeup) and the patches on the legs are much improved. I would say it's worth investigating the light treatments, though DD's friend says they don't work for everyone. Yeah! I was hoping to find someone who'd tried this! It's great to hear that they worked for your DD's friend! I've heard they don't work for everyone, but when they do work, they work well! Do you know if insurance covered the treatments? I've got so many therapies going over here with four special needs kids that I am almost completely tapped out... Quote Link to comment Share on other sites More sharing options...
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