Comment by michelle on May 12, 2013 at 9:16pm

Curious inappropriate comments seems to come along with this disease.  As a grown adult with AU for only a short time. I struggle with the stares and comments.  I can only imagine what its like for a young person.  There are several groups for young people on this site.  You may want to check this out.

For me I am fine with educating my friends and family about au.....I don't feel obligated what so ever to a stranger  (with good intentions or not) who has no business in my business.

Comment by Dena on May 13, 2013 at 2:16am

I agree have her tell them she has Alopecia. Most people automatically assume cancer because they have never heard of Alopecia. Very few people know what Alopecia is. Remind you granddaughter that people are going to ask questions, because they are concerned for her. It use to really bother my daughter, but once I said this to her it helped. She really didn't like people thinking she was sick, but when she thought of it from the perspective that people care she felt better. Of course we still have days when we would just like to blend in and not share medical histories with complete strangers.

Comment by Cindie on May 13, 2013 at 10:08am

This is horrible....for a young child to go through......if she explains to them what Alopecia is, she should make sure to tell them that YOU CANNOT CATCH IT FROM ME, BECAUSE IT IS NOT CONTAGIOUS.  A lot of people mistakenly believe that, which only adds to the hurt and isolation a young child can feel. 

Comment by Cindie on May 13, 2013 at 10:10am

I am not sure, Dena, that I agree that people ask questions "because they are concerned"....I lean toward what Michelle says about "curious inappropriate comments".....at least that has been my experience.  Truthfully, most people don't want to be "educated".....they want to believe what they want to believe, and in the back of their minds, they are saying, "thank God it isn't me..."

Comment by Dena on May 13, 2013 at 1:43pm

Cindie..I agree that some people make "curious inappropriate comments", but I don't think they are the majority. Especially with people we know. At my daughters age I don't think she could grasp the concept of someone like that, so I may be misleading her sometimes but I think it helps her deal and believe that most people are concerned. If this were happening to someone else that we know I would probably assume the same thing and be concerned like most people. Even though I have a daughter with Alopecia, I still see someone in town bald and my first instinct is to think chemo. There are just more people going through chemo that people with Alopecia. I agree with make sure they know that it isn't contagious.

Comment by Cindie on May 13, 2013 at 3:10pm

Your daughter is lovely, and has the most beautiful blue eyes....Understood about "people you know"....please lovingly prepare your daughter for "people you don't know".....

Comment by KarenGinny - Iowa, US on May 14, 2013 at 12:22pm

That was terribly rude of that woman to pull off her wig in a very public place and I hope it doesn't happen again. Hopefully most people who make comments or ask about it are doing it out of concern, but there will always be those rude strangers who don't even think about what they are saying and don't care about the truth. I have partial alopecia around the front of my head and try to hide it, but do worry about someone pointing it out to me in public. I'm not sure how I would react, since I would probably be in shock! I'd like to say, "I have alopecia; what's your problem?".

Comment by ASRN on May 16, 2013 at 12:00am

Wow - I am appalled that someone would actually remove her wig! That's like taking off someone's clothes! Who does that?! Anyway - I have found that MOST people are more tactful and generally kind. If they are asking questions I think it is generally out of concern or curiosity. I would teach her to be able to explain her condition well to others and be very up front with people she DOES know so she has support no matter WHO is with her so she can have back up when she deals with someone so rude. I am so sad when a young girl has to deal with this kind of thing. I know it is cliche' but it's just so unfair.

Comment by grandma concerns on May 16, 2013 at 8:14am

On the upside.. new update.. my gd has gotten a backbone and has taken upon herself to voice to others that she is beautiful! Hurrayyyyyyy! I couldn't be happier! She is going through a messy time with her mother and father fighting over child possession but she is staying strong, and I am so very proud of her! She and her sister are leaning on us (her grandparents) who live close to them and are talking a lot to us about their problems. So cool! Thank you everyone for your help, I have told her all of your suggestions! Don't know what I would do without this site sometimes. Your all such soldiers!

Comment by Fatimah on May 16, 2013 at 8:45am

youre such a good grandparent to ur grandkids :) sometimes thats all kids need-love & support...

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