Alopecia .. wrote this in September on Facebook..

I met a woman today who's grand daughter was just diagnosed with alopecia universalis. The same disease I've had for over twenty years. Her grand daughter is just six years old, and lost all of her hair over her entire body within weeks. She said they were able to get her a human hair wig from 'locks of love', but that the child is still pretty affected by her ailment. I advised her to just let her little grand daughter know that she was beautiful and incredible despite being bald. I told her to foster in her a feeling of self confidence. It is hard to be a bald girl. Boys can pull it off a little easier than girls can. For whatever reason, the hair on a girl somewhat defines her. She is known as the redhead, the brunette, the girl with long eyelashes, or perfect brows. I imagine a little girl of six with this disease, not being able to wear pig tails, do gymnastics or feel comfortable at a swimming pool. I imagine all of the questions she will answer about not really being sick, but rather having dormant sleeping hair folicles. I imagine her panicking that she is sick, thinking she may die, because her hair won't grow... and isn't it true that only those women that are truly sick lose all of their hair? Poor Baby. Then I realize, I'm not imagining. That was my experience. Is my experience. I suddenly want to give this woman all of the little tricks I have learned over the years for hair replacement systems. I want to tell her which products work for human hair wig longevity, the best adhesives, the worst medications, the little miraculous things that made me feel more 'normal'. I decided it best to just tell her to make sure that little girl knows, beyond and above that this, being a bald girl, is her normal. That she should never be ashamed of that. That she is beautiful, unique and incredible because of it. That she should be comfortable with or with out her hair. Everyone wants to be special, everyone wants to be someone different. Some are given that opportunity whether they want it or not. I was. It defined the person I am now. I know that it might seem really simple, and kind of trivial that the loss of hair ... dead cells ... could make a person a little more empathetic, a little more open to abnormality, a little more accepting of all people. But, I think if I hadn't lost my hair at such an early age and gone through all of the things I had, I wouldn't fight so hard for those that, by societal standard, are different. I believe that the events of my past through the entirety of my life made it possible for me to be patient with and love people. My heart goes out to that little girl. I hope one day I can meet her and tell her how wonderful she is myself.

Rambling girl I am. Just thought I would share.

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Views: 82

Comment by cindy Babs on January 30, 2012 at 5:37am
She will be a lucky little girl, teenager, woman if you do meet again. Thanks for sharing your sweet story...
Comment by Tallgirl on February 2, 2012 at 10:01am

I had two little pen pals through NAAF's newsletters years ago. With one, I was even able to write to the parent, who so wanted to know what to do for her little girl. K and I exchanged letters (she was in kindergarten at the start), crayon art, and even a cassette tape (she made for me, in her sweet little southern accent). We lost touch, but I found her this year and she is now a married woman, with six kids in a blended family (she's married) and a wonderfully fun attitude about her alopecia. You never know when you can play a role in someone's life. I hope you DO get to see her again, and share a milk, a smoothie, a coffee, or a trip to the wig salon tofgether!

Comment by Margaret H Baker on March 16, 2012 at 12:26pm

Great Kat! We would love to hear from you!!!! Please send a brief description of your story along with a pic (either with or without wig for our files), to:womenbehavingbaldly@gmail.com and we'll arrange an interview time.

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