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Permalink Reply by Tallgirl on March 2, 2009 at 12:39am

Actually, we had it in our systems, hidden, and it just came out. No one knows why yet. Some say it happens more in families where there is asthma, diabetes, and other conditions. I know my family in the past had both of those, so I was a good candidate. Anyway, alopecia does make us more immune to colds and some other diseases. Like, every winter my sons and husband got sick and they could never figure out why I didn't also get the flu. Alopecians also learn not to be all full of themselves and conceited...we start to care more about people who are different in all kinds of ways, and we think and feel more about people and important issues after our own experience. So, even though I am older and a teacher, I remember getting my OWN alopecia at ten years old. Maybe it came on because I was turning into a teen female???? Maybe it is a sign you are growing up. At least it's not acne or a beard! Go on the group Children with Alopecia. Also talk to Carly...she's cool.

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Permalink Reply by Children's Alopecia Project on March 2, 2009 at 8:05pm

My Name is Jeff Woytovich, I have a 10 year old daughter named Madison who has Alopecia Universalis. She lost her hair in kindergarten when she was 5.

I started a non-profit called the Children's Alopecia Project, you can visit us at www.childrensalopeciaproject.org and have your mom or dad register. We have a girls chat room and a parents chat room monthly. We also have a big data base with other kids around the world and we can help you find others near where you live that want to met other kids.

Please have your mom and dad email Betsy at betsy.woytovich@childrensalopeciaproject.org and be sure to have them go to our website to register and we can start looking for friends with alopecia that live near you or want to be an email buddy.

Remember, it is not your fault, it's just your body fighting aganst itself. You are perfect with or without hair, remember that. It matters who you are on the inside and not on the outside, you are perfect the way you are, hairy, bald or just a little in the middle. It is not your fault Maya.

Take care and we look forward to hearing from your family.

Jeff Woytovich, Founder
www.ChildrensAlopeciaProject.org

My Family

Hi Maya:

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Permalink Reply by Paige on March 2, 2009 at 10:54pm

Hi Maya. My daughter is 12 years old and dealing with this also. I know what you mean about feeling like you did something to cause it. I felt like that too for awhile....thinking that as her mom I did something wrong. Like I should have made her eat more spinach!!!! (YUK)

You know what....you didn't do anything that caused this. Just like I didn't do anything. It just happened. Alot of people deal with alot of different things. Some kids have ADHD, some kids have really bad pimples, some kids have to wear braces, some kids have cancer. This is just your thing that you have to deal with.

I know it stinks like the boys' dirty socks, but its the cards you have been dealt. Be happy for who you are and know that you aren't the only one going through this. Hang in there, sweetie!!!

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Permalink Reply by Becca Dey on March 3, 2009 at 3:46pm

Hey Maya!
I know exactly how your feeling, im 17 but i started loosing my hair when i was 11. I know its hard not to blame yourself for your hair falling out, but it really isnt!! I felt like that too, but after living with it for 6 years im finally coming to terms with it not being my fault. What kind of alopecia do you have? I have alopecia areata (patches of hair loss) I have never known anyone else who suffers from it. I know for definate my hair falls out due to stress so at the moment im trying my very hardest not to get stressed! Anyway, although i can't offer you much advice on treatments or anything, feel free to speak to me about any of your concerns and i'll be happy to listen! Hope i can be of some help!

Becca xxx

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Permalink Reply by Maya on March 7, 2009 at 2:10pm

Hey Becca,
I also have alopecia areata and im soon getting a freadomw wig (im going wednesday).Do you wear a freadom wig?Or any type of wig?
-Maya

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Permalink Reply by Kat on March 7, 2009 at 3:11pm

I wear a freedom wig, they are brilliant - changed my life!

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Permalink Reply by Erin on March 8, 2009 at 7:31pm

hey. I am now 24, but developed Alopecia Universalis when I was just a bit older than you. If you ever wanted to talk or vent or whatever I would love to help with anything, It is tough being a young girl and teenager with Alopecia, but it is going to make you soooo strong and you will see some things that other take soo long to realize.
Yes it is easy to wonder why you, I wonder that still sometimes, my sister has been through the same things and is perfectly healthy with no hair loss or immune problems, but in some ways you are so special in a fun and exciting way. You will see. Ok if you ever need something (even wig or makeup stuff!) just message me or something.
remember you are beautiful :)

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Permalink Reply by Chandler on March 31, 2009 at 5:16am

My daughter is 10 years old also and was just diagnosed last week. We are very shocked by this and she would love to meet and talk to kids her age with the same disease. Maybe, you can give her some advise on how to share this with her classmates and friends. She is not looking forward to that, but she will have to do it soon because her hair is falling out more and more everyday.

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Permalink Reply by Maya on April 1, 2009 at 4:37pm

for me,at first, i didnt tell anyone for a while (because it was just on my forehead and the hairline) i just allways wore a hat i loved because i still had lots of hair and then later on i just told my best best best friend and when i got a wig (two weeks ago) i told some of my friends but im deffinetly not ready to tell everyone.

-Maya=]

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Permalink Reply by Shana and Taylor on April 3, 2009 at 5:02pm

hi! u already have been chatting with me but feel free to IM me or email me....just ask for my AIM screen name or email...!!!!

XOXO
Taylor

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Permalink Reply by Debbie Haynes on February 6, 2010 at 8:11pm

Hey Maya,
My daughter Elizabeth has just recently lost all her hair, she is thirteen and we live in California. I will ask her if she would like to be a penpail. If you are interested let me know and I will tell her.
Mrs. Haynes, Elizabeth's mom

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