Comment by Carol on June 20, 2008 at 8:41am

There is nothing wrong with telling your daughter the truth but I do hope you are keeping her feelings in mind when you are telling her the cold hard truth. She's only four years old so she won't understand much more than the fact that she's "allergic to her hair", just like other kids are allergic to cats or peanut butter. Your right that there's no sense in giving her false hope because there is no cure and alopecia is so unpredictable but you are wrong about the teasing - at least to a certain degree. I think you're more afraid of her being teased than she is. The NAAF has an amazing video you should send out for (should be free of charge). This video is for kids to take to class to show their teachers and peers so that they may better understand alopecia. There is also a booklet you can ask them about called : "School pack" and there are some wonderful resources inside about talking to schools and caretakers.
The number one thing to instill is that there is nothing wrong with them - they are beautiful and are capable of wonderful things if only you allow them. Alopecia is no one's fault, not hers or yours and although you won't always be there to fight her battles, you can educate her to make good decisions on her own and be there for her when she just wants someone to listen. She doesn't need anyone's pity or opinion, she needs their strength so make sure you share lots of it! When other's tell you she needs hope, tell them that you do have hope - hope that she will grow into a decent, level headed human being because that in itself is becoming a rare thing! I'm here if you need to talk!

Comment by Drew on June 20, 2008 at 12:19pm

I agree that you are not doing anything wrong. The first doctor I had tried the whole "give you some hope" direction with me. She kept telling me "I just want you to know that you're not going to lose all your hair. And it will grow back so you don't have to worry." Well I got sick of hearing that and watching more hair come out, so I switched doctors. My new doctor reminds me that it's unpredictable and that I could lose all my hair, or it could all grow back, and she's working to stop it from spreading, and trying to make the rest of it come back.

So I think it's alright to teach her the truth and not try to give her the idea that all the hair is going to grow back when you have no idea if it will. Like Carol said though you need to teach her that it's okay if she doesn't have hair though, that she's unique and that she's a strong person. And I love the line Carol said about the becoming a level headed human being. Best of luck Karen...

Comment by Carmella on June 20, 2008 at 1:09pm

No matter the condition of my children (who have not developed alopecia to date, although one has asbergers ... if that's who you spell it) my favored method of teaching about life is simply that it is life and you are dealt what you are dealt, but you don't have to take it. In other words childern who would be awful to you do not deserve your time and the more positive energy you put out there the more you'll see in return. I'm not making any sense, nevermind.

Comment by Jessi on June 20, 2008 at 3:34pm

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Comment by Jessi on June 20, 2008 at 4:03pm

I sincerly apoligize if i came off RUDE (as someone put it). i was not trying to be what so ever.

You seem like a Very strong Woman and i'm sure everything will work out for the best....someone once told me "Everything Happens For a Reason"....it just takes a while sometimes for that reason to come out.

once again I Am Sorry for pushing this all on you....like i said I was NOT trying to be rude in any sort of way....

Sincerly Yours,
Jessi

Comment by Jennifer and Alieena on June 26, 2008 at 3:40pm

my daughter is also 4yrs old, she has already been through one school yr child development started out great, school pics came in her hair was short but she cut it all by herself in april, anyways be about december it started thinning really bad then by feb she started with one bald patch, then it got bigger and bigger. when we found out what it was i cried and crid thinking why? one more thing wrong in our lives. why alieena, why not me i would take her place in a heart beat, im an adult and dont have to go through childhood, just let her have a normal one. and someone told me too that everything happens for a reason and God doesnt put more on your plate then he thinks you can handle. its only been a few months since we found out she has alopecia but i still get upset and burst into tears when i see the websites with bald children and adults. by the end of her school yr she had a pretty noticable bald spot on her head and every one kept asking questions, i even had to get something from the doc saying no one could catch it from her so she could finish out the school yr. adults and children are mean to the unknown. she gets stared at everywhere we go and if we are in line people kind of back away. i have learned all i can do is tell her every morning and every night how beautiful she is, and every day and every night she asks the same thing, mommy if all my hair falls out will i still be beautiful, and my answer every time is no honey you will be even more beautiful.

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