What do you tell your child who has been diagnosed with vitiligo?

Posted by Nicki on July 20, 2011 at 4:51am

My daughter is 6 years old and has had vitiligo for 2 years.  She copes so well with it and we have never shared with her what she has.  I feel like we can't hide it anymore and she needs to know what's going on.  My husband and I want to sit down and have a talk with her and explain to her what her white spots are.  We want to do it in a way where she is not self concience of them at all. How did you tell your child?  How did they react?  I appreciate your feedback. 

 

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  • Danielle Brown September 30, 2011 at 5:02pm
    For a long time my daughter didn't even realize there was any difference, but once we decided to start using the protopic she began to ask questions. We have explained to her about her "spots" and her gray hair.  She now calls it her super hero hair!  She took it really well she tells us her spots make her her which is really insightful for a 6 year old. Actually my oldest daughter who does not have vit took it harder than my daughter with vit.  My oldest cried when she realized her sister would have this forever and the next day went to her sisters teacher and said that if anyone picked on her sister to come gte her so she could comfort her. 
    • Jen Davis > Danielle Brown September 30, 2011 at 5:09pm

      That is awesome Danielle.  She is so lucky too to have an older sister at the same school to look out for her.  :)  

       

      So far the school year has gone well here for my little girl.  She's had some questions asked by friends and she's handled it on her own.  It was kind of neat actually as the other day she came home from school and said that a girl in her class asked her about it and then said that she thought it looked like eye make-up and that it was really cool!  :)  Zoey (was smiling and proud when she shared that with me.)  Made my heart happy that she was so matter of fact about it and almost seemed proud.  She has her visible white patches on her eyelids and a bit around her eyes.  

       

       

  • Jen Davis July 21, 2011 at 9:46am

    My dd was diagnosed last month at the age of 7.  We were very matter of fact and truthful.  She's dealing with it incredibly well so far.  It's pretty much a non-issue.  We'll see how the start of the school year goes.  We've been thinking about putting a little book together with pictures of her as well as ones that she draws to present to her second grade class this coming year in hopes of eliminating questions and stares.  I'll let you know if we do it and how it goes.

     

  • Natalie Clark July 21, 2011 at 3:30am
    My daughter's started in kindergarden, she is going into 3rd grade this year.  She has known what she was dealing with since the day we left the doctor's office.  I would not present it as something negative, with my daughter I was very honest, but positive, it sounds as your daughter is already in a positive way.  I also linked up with AVRF, The American Vitiligo Research Foundation, you can google them.  They have alot of profiles on other children and my daughter found comfort in that, seeing that they are other children dealing with the same.  I would just be open and honest with your daughter, I think it will all be fine, and I agree she is old enough to understand and learn.  Have a wonderful day!
  • Marquetta Gaines July 20, 2011 at 6:25am
    My daughter is 6 as well. She started getting spots over a year ago but wasn't diagnosed until this year. I also agree being honest and equipping them with what to say when people ask them questions is the best way to go. I talked to her about Michael Jackson even. Just to show her this will not stop her from being anything in the world she wants to become. She's a very smart little cookie and seems to be handling it very well. Show her pictures and explain all people come in different shapes colors or sizes. This is what is unique about her. And as she uses her creams show her as it gets better. Good luck!
    • Nicki > Marquetta Gaines July 20, 2011 at 8:18am

      Thanks for the advice:)  Are you using any creams on your daughter that seem to be helping? 

    • Marquetta Gaines > Nicki July 21, 2011 at 5:43am
      No problem. Yes she uses desonide and triamcinolone. She got wonderful results from it. Almost complete pigment came back. But its strong so they just switched her to pro topic. Which supposedly will keep progressing the same but not as much risk for her skin thinning. Shes starts that today M-F and the stronger one on weekends.
  • Becki July 20, 2011 at 6:07am
    My daughter is 7 and has had it for over a year.  We are very honest with her and have given her examples of what to say when someone asks her what it is and have practiced how to answer that question.   She will need to spend the rest of her life caring for her skin in a more proactive way then most, so we have talked about how to do that.  She sunscreens more than other people, etc.  She has two little girls in her class who are Type 1 Diabetics.  I have compared her skin care to these girls when talking with her.  They need to monitor thier blood sugar and do finger pricks etc.  She needs to care for her skin.  I tell her that everyone has something special about them.  That being said, we really don't talk about it very much anymore.  We put her protopic on.  She sunscreens two-three times a day, depending on what we are doing.  I try to keep her out of the sun from about 11-2, but she doesn't know that I do that... nor do my other kids.  I just structure our day in such a fashion that she isn't exposed to the most harmful rays.  She seems so at ease with it that I am always amazed by her.  I'd like to think that we somehow did that, but I believe it is just her.   She is comfortable in "her own skin!"  I believe honesty is the best policy
    • Nicki > Becki July 20, 2011 at 8:21am
      Thanks, you helped me out:) 
    • Marquetta Gaines > Becki July 20, 2011 at 6:25am
      Great answer
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