Replies to This Discussion

Permalink Reply by MacKenzie Smith and Melanie (mom) on February 22, 2009 at 7:51pm

Hi Meaghan,

You are not alone. I was starting to think that our family was alone. My daughter, MacKenzie, who just turned four was born with alopecia totalis. She has no scalp hair and keeps losing her eyelashes. It is hard to deal with sometimes. she is just getting to the age where she is noticing that she looks a little different from the other kids. I keep telling her that everyone is different in there own right. Would love some advice on what to tell her.

Bye for now.

Permalink Reply by meaghan evelyn smith earle on February 25, 2009 at 6:10pm

well you could tell her that shes not the only one , shes lucky , one in 1000 people have alopecia, i started to loss my hair when i was about 4or 5, and you can tell her that shes special , all the people in my class know about it , at first they didn't notice , but then someone took my hat off and you could see my spots, and now no one cares , i have alot more friends now :)

Permalink Reply by Carol on May 3, 2009 at 9:21pm

I suggest you show your daughter some of the pictures of other kids with alopecia online, here and at CAP and NAAF's websites. There are plenty of vids to watch about it as well and how other kids have dealt with this at their school. Encourage them to share their stories with everyone and spread awareness of alopecia. There are plenty of fun fundraisers the school can take part in as well to encourage acceptance like hat day for example. When it gets out in the open you'll find that quite often people are more accepting and less curious. Remind her that the other kids are not as lucky as her cause she can put sparkles right ontop of her head or do face painting AND headpainting. There is also another little saying (don't know how religious you are) that god gave everyone with ugly heads hair and left us perfect heads bare for everyone to see. There is also a girl on Alopecia World who works for radio Disney, her name is Olivia Rusk (sp?) and she's a terrific role model for young alopecians. Good luck! :)