HI!!!

I'm Vanessa. I'm 14, I'm in ninth grade, I play volleyball (badly) and clarinet (less badly), and I have alopecia areata, which is a long way of saying my hair fell out. All of it. On my head anyway.

It doesn't hurt. You can't catch it. I'm not sick. I'm not on chemo. I didn't shave it to be punk (though I have thought about telling people that). I just don't have hair right now, and maybe someday I will again, and maybe I won't, and either way I have THIRTY-ONE HATS, so I'm doing fine, thank you very much.

I made this page because when I first found out what I had, I typed "alopecia" into the search engine and everything was for grown-ups or doctors, and it was either really boring or really scary. So this is for girls like me, and for anybody who's ever stared at me in the mall. (HI. It's okay. Just don't stare for like a whole minute. That's weird.)

MY STORY

The quarter. When I was eleven my mom was braiding my hair for school and she stopped and said "Nessa, hold still" in this weird voice. There was a bald spot on the back of my head the size of a quarter. Perfectly round. Totally smooth. I had no idea it was there. I thought maybe I'd gotten gum in my hair and somebody cut it out while I was asleep, which makes no sense, but I was eleven.

Our regular doctor sent us to a dermatologist (skin doctor, which is also a hair doctor, which I didn't know). She looked at it for about ten seconds and said "alopecia areata." I thought she said "a la peach something" and I almost laughed, but my mom's face was all scrunched up so I didn't.

More spots. For the next year and a half I got more spots, and some of them grew back, and then new ones came. I wore my hair in a low ponytail to cover them. I got really good at ponytails. I got shots in the spots and put on creams, which I explain in the FAQ. Some of it grew back for a while. Then the summer I turned thirteen, it all came out. Like, in the shower. In my brush. On my pillow. My mom kept vacuuming my room like that would help. By August I had about six hairs left and I made my dad shave them off in the backyard, because I wanted it to be MY decision. That's called alopecia totalis, when it's all the hair on your head.

I cried a lot that summer. I'm not going to pretend I didn't. I cried in the bathroom with the fan on so nobody would hear, except everybody heard, because that fan is not that loud.

The bandana. The first day of eighth grade I wore a pink bandana with white paisleys on it. I tied it in the bathroom mirror for forty-five minutes. My friend Maria met me at the corner so I wouldn't have to walk in alone, and she was wearing a pink bandana too. She didn't say anything about it. She just had it on. That's Maria.

People stared. Some people asked. Most people got used to it in about a week, which is about how long people take to get used to anything in junior high. My teachers were cool. My gym teacher let me wear a cap in gym. My science teacher asked if I wanted to do my report on alopecia, and I did, and I got an A, and two people in my class told me afterward that their aunt or their cousin had it too. It's not that rare! (See the FAQ.)

The lunch line. Okay. So in October a boy named Troy, who sat behind me in social studies, came up behind me in the lunch line and grabbed my hat off my head and held it up in the air. It was my black velvet beret, my very first hat. A bunch of people laughed. Not most of them, but enough. I just stood there holding my tray. I couldn't even move. My face was on fire.

Then my friend Kat (Katherine, but don't call her that) walked over, took the hat out of his hand like he was a little kid with a toy he wasn't supposed to have, and put it back on my head. Kristine told him, really loud so the whole line heard, that he was the only one there who should be embarrassed. And Maria sat with me in the girls' room until I stopped shaking.

But that's not even the best part. The next day Kat, Maria and Kristine came to school in hats. And so did the rest of our lunch table. And then the girls from volleyball. And two boys from band. By sixth period there were like FORTY PEOPLE in hats, and we don't even have a hat rule at our school, but the vice principal came around anyway to see what was going on, and when Kat explained, she just said "carry on, ladies" and walked away. We call it Hat Day. We're doing it again this year on the anniversary. You can't stop us.

Troy said sorry, in front of my locker, a week later. I think his mom made him. But he said it, and I said okay, and now he says hi in the halls like a normal human. People can change. Sometimes it takes forty hats.

Now. It's been over a year since it all came out. I still have my eyebrows (mostly) and my eyelashes, so it's totalis and not universalis (FAQ!!). I'm in high school now. Nobody grabbed anything on the first day. I wore my leopard bucket hat to match this page. I'm doing fine. Better than fine, most days.

THE FAQ
(Frequently Asked Questions, which I am asked VERY frequently. I'm not a doctor! I'm a ninth grader. This is what my dermatologist told me and what I read. Ask your own doctor about you.)

What IS alopecia areata?
It's a condition where your immune system, which is supposed to fight off germs, gets confused and attacks your hair follicles by mistake. (Follicles are the little pockets in your skin that hair grows out of.) So the hair falls out, usually in round patches. Doctors don't totally know why it happens. Nobody did anything wrong to cause it. Not me, not my mom, not the shampoo.

Is it contagious?
NO. NO. NO. You cannot catch it from me, my hats, my hairbrush (which I don't even use anymore, ha), or sitting next to me. Please tell your little brother.

Does it hurt? Are you sick?
It doesn't hurt. Sometimes a spot tingled or itched a little before the hair came out, but that's it. I'm not sick. I'm healthy. I can do everything I did before, except French braids.

Will it grow back?
Maybe! This is the frustrating part. The follicles are still alive, they're just being bothered, so hair CAN grow back, sometimes even after a long time. But nobody can predict when, or if it'll stay. Some people get one spot and it grows back in a few months and never comes back. Some people go back and forth for years. Some people lose it all for a long time. You just don't know. I've decided not to sit around waiting for it.

What are totalis and universalis?
Plain alopecia areata is patches. Alopecia totalis is when you lose all the hair on your head (that's me). Alopecia universalis is when you lose all the hair on your whole body, eyebrows, eyelashes, everything. They're all the same condition, just how much.

How many people have it?
More than you'd think. About one or two people out of every hundred get it at some point in their lives. Kids, grown-ups, boys, girls, everybody. Most of them just have a spot or two that nobody ever notices.

What did your doctor try?
My dermatologist tried a few different things over two years. Steroid shots right into the bald spots (with a tiny needle, every month or so; they sting but not terrible). Steroid creams and another cream you put on and wash off. Some of it helped some spots grow back for a while, especially when I just had patches. Once it all came out, my doctor and my parents and I decided to take a break from treatments for now. We might try again later. Everybody is different, and there's no one treatment that works for everybody, so talk to your own doctor about what's right for you. And watch out for ads that promise to cure it. My mom almost bought something from a magazine for $59.95 and my dermatologist said save your money.

Why don't you wear a wig?
I tried! It was hot and itchy and I felt like I was wearing somebody else's head. Lots of girls with alopecia love their wigs, and that's totally great. Wigs, hats, scarves, bald, whatever. It's YOUR head. I just like hats better. Hats are fun. Wigs are work.

Is there anybody else like me?
YES. The National Alopecia Areata Foundation has information for kids and parents, support groups in a lot of places, and a big conference every summer where hundreds of people with alopecia get together. A girl who wrote in my guestbook went this year and said it was the best week of her life, because for once everybody in the room looked like her. I am SO going next summer. I've been saving my babysitting money. I'm at $86.

WHAT I WANT PEOPLE TO KNOW

It's okay to ask me about it. It's NOT okay to touch my head without asking. (Would you rub somebody's ponytail? No.)

Please don't say "at least it's not cancer." I know it's not cancer. I'm still allowed to be sad sometimes.

Please also don't say "it's just hair." It's just hair to YOU. You have hair.

I'm still me. I still like the same music and the same boys (NOT telling) and the same dumb movies.

If you see somebody getting picked on, you don't have to be a hero. Just go stand next to them. That's what Maria did. It's enough.

If you just found a bald spot, or your daughter did: breathe. Go see a dermatologist. It is going to be okay. Not because your hair will definitely grow back, but because you will.

Sunscreen on your head in summer. LEARN FROM MY MISTAKES.