I am a 16 year old girl with Alopecia Universalis (no hair anywhere on my body) AMA

If you take a band-aid off slowly, does it hurt you?

I've wondered if it hurts because the band-aid sticks to hair, or if it hurts because it sticks to skin...

It hurts a lot less

Do your friends at school know about your condition or do you keep it to yourself?

I find it best to be very open about it. If I don't see it as a big deal, no one else will either. Most people who know me know about it.

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The first diagnosis didn't bother me at all. I was a kid, and I didn't really care if I had a bald spot. When all of my hair fell out though, I was horrified, but learned to live with it in a matter of months.

Day to day, it's easier to get ready in the morning. I can't go to waterparks or go on rollercoasters with a wig though, which is kind of a bummer!

have you ever had any mishaps like an eyebrow falling off or something? :D

A few times! I've had my wig fall off in public twice, but it's something you just laugh off and move on with

Do you get really cold In the winter ?

YES. I wear hoodies and sweats and beanies all the time in the winter

Does the disease (is it considered a disease?) have any other ill effects? Shorter life span, sick often etc?

It's technically an auto-immune disease. There are no other effects, I just don't have hair. That's why I prefer call it a condition, because I'm really not sick, just bald.

I was really concerned about this. Glad to know it's just the no-hair thing. That's actually pretty awesome, in the big scheme of the things.

• You'll never be an old lady with a mustache or ear hair.
• You'll never have to be shaved for surgeries.
• Your hair will never get caught in zippers (head hair and pubes)
• No one will ever pull a hair out of their soup and wonder if it's yours.
• Same with shower drain clogs.

I can only imagine how much more awesome plush blankets and stuff feel to you. One time I shaved off most of my body hair (some ordeal where I let a friend of mine shave a mustache into my chest-hair and when I was cleaning up that mess I just kept going) and afterward I couldn't stop rolling around in my sheets! Everything felt so soft!

As an aside, you are a pretty girl and without any hair, you just look like a badass.

My questions:

• Are these as awesome as I'm imagining?
• Tattoos? (Don't answer this one if you've answered it elsewhere. I haven't started looking for anything about that yet but I thought I'd say it just in case.)

Yes, they are awesome. getting a tattoo on my head would be awesome

Any benefits to being hairless?

I don't have to shave, which is AWESOME

How does having no nose hair affect you?

Runny nose x100

What about ear hair? How is the ear wax situation?

When you get startled, what stands up on the back of your neck?

Also, do you think this affects how ticklish you are?

I'm honestly not sure about ear hair. When I get startled, I notice nothing happening on the back of my neck. and no, I'm still pretty ticklish

Is the wig/lashes/brows your natural hair color?

Yes

Are you aware of this Olympian?

http://www.telegraph.co.uk/sport/olympics/cycling/9095307/London-2012-Olympics-GB-cycling-champion-Joanna-Rowsell-reveals-how-alopecia-spurred-her-to-gold-success.html

Ctrl + F: Joanna Rowsell.

This woman is incredible. She lost her hair at an early age and got on the podium to receive a medal at the World Championship au natural.

Shes going to win gold in the womens 3000m team sprint as well, after breaking her own ( with team mates Dani King and Laura Trott) world record earlier today.

oh wow, I actually didn't know about her! that's incredible

I have one question for you: do you have issues with dust seeing that nose hairs help trap it and stop it entering your nasal cavity/lungs? Do you still get tickling that makes you sneeze?

Yes, I still get that tickle. If I do have an issue with dust, I never really noticed it.

Does not having hair yourself ever make you jealous/fascinated by other people's hair?

In a weird way, yes. I play with my boyfriend's hair all the time.

Do you have boogers? Where does the dried snot go? When you have a runny nose, does it just drip down?

Do you get goose bumps?

Haha, yes I have boogers. Although my nose runs really easily now, which can be kind of embarrassing at times. and yes, I also get goose bumps

How often do you have to endure people joking about your condition and what is the best way you have found to deal with it? Do you laugh it off, throw it back at them, roll your eyes and say "well i've never heard that one before"?

Also, do people ever mistakenly assume you are a chemotherapy patient?

When people make fun of me, it's normally behind my back. During the few times it has happened to my face, my friends have stood up for me. I'm really lucky to have them.

A few times, but I just correct them

My son has Alopecia. He lost a random chunk of hair, his eyelashes and eyebrows, it grew back though. The doc told us to use a topical steroid to help it come back. We elected not to use it and it did grow back.
Did you try any of this stuff?

I did try a topical steroid when I had alopecia areata. It didn't seem to make much of a difference. I was offered steroid injections when the condition got worse, but my parents and I decided not to do it because of the risks and side effects.

Know that it's not definite that your son will always have this. It's very possible that his hair could grow back completely and the hair loss could never return! Just always offer him support, and let him know that he's not alone out there, even though it seems like an incredibly rare condition.

It grew back. He won't let his eyebrows grow in, but they're trying.

I wish him the best of luck

How long does it take you to put all that together? I bet you just shake your head when your friends complain about how long it takes them to get ready in the mornings..

It actually makes it a lot easier! I put on a wig, and my hair is done. Eyelashes and eyebrows are very easy to get on with some practice. and that's pretty much it

I dated a woman for over two years with Alopecia Universalis, and she would wear a long scarf, and made it look AWESOME! (You could try that at the waterparks/rollercoasters)

It took her a bit of getting used to, but now she wouldn't go back to wigs for anything.

I hope I can do that one day :)

I assume the disease is genetic. How likely is it that you'd pass it onto future children?

1 in 5. Because of this I'm seriously considering not having biological children at all. I don't want to chance them having severe self esteem issues, because I've seen that happen with others who have gone through it.

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When I tell people, the first thing they say is normally "wow! I would have never noticed!" a few people figured it out on their own, though.

thanks for posting! I didn't really know about this condition. What kinds of disadvantages do you notice about not having hair? (besides obvious, cosmetic things, of course)

Being outside in the summer is almost unbearable while wearing a wig. Sweating is very uncomfortable.

I'm sorry to be so uncouth, but im sure shit like this is going to get asked eventually so i might as well fire away.

Seeing as this shit hit you "in force" when you were about 12, does that mean you have never had the GLORY (pain in the ass) of having pubic hair?

Haha when I say I have a hairless body, I mean a HAIRLESS body, so yes

I hope this doesn't come across as being offensive, but has anyone ever assumed that you have cancer and the lack of hair is from chemo?

Sometimes, and that's why I don't like being in public without my wig.

Does the wig fall off, easily? Has it ever fallen off in public?

Twice. The first time it terrified me, and it was not fun. The second time wasn't as big of a deal, I just laughed it off. You can secure it with double sided tape if it's a really windy day or something of the sort, but most of the time it stays on

Nice, double-sided tape just keeps on proving itself to be an awesome invention. I'm glad that it's not too embarrassing and easy to laugh off. Is the wig physically comfortable?

Wigs are all made different ways. Some are incredible comfortable, others need some getting used to

My four year old daughter was diagnosed with Alopecia Areata last october. Her mother and I had been noticing thinning hair and a few bald spots. Her doctor told us the worst thing associated with Alopecia was self esteem issues of those who have the condition(we also like to think of it that way, since she's not in any bad health).

So a few questions. How has your self esteem been through your years of the condition, from Areata to Universalis? Did you get any warning signs before the move to Universalis, or did it just happen rapidly? Are you getting any new growth now? Thanks in advance. My daughter's condition has been on my mind alot lately because I've found some new bald spots on her head.

When the first bald spots happened, I was still very much a kid and didn't care that much. I had on and off bald spots for about two years. When all my hair fell out, it happened very fast, in a matter of weeks, and I was in middle school, so it was pretty scary. Today, I have significant patches of hair on my head as well as some eyelashes which is very exciting.

My advice is try not to make a huge deal out of it, at least in front of her. Just teach her that it's something that makes her different, and that it doesn't make her any less acceptable or any less beautiful. All you can do is help her feel comfortable in her own skin.

Do you always wear the wig etc when going out, or on some days do you just say, 'fuck it, I'm gorgeous no matter what' and skip the routine?

I normally always wear it. Although I'm open about it, I would rather not people immediately assume I'm a cancer patient.

is there any major health risks related to this?

No. However, some people go through with steroid treatments, and that can have some nasty side effects.

Can you elaborate on the steroid treatment? Does it help people grow hair back or something?

Some doctors have told me it does. Many steroid injections can damage your joints, and could effect my ability to reproduce

Did you incur the type of teasing I would assume as a child?

Have you had any instances where you really wished you had hair? Any where you were super glad you have none?

Have you ever had a really bad head sunburn because of it?

I think its fabulous that your hair is interchangeable like Mr (er, Mrs. i suppose) Potato Head, and not ever having stabby stubble or ingrown hairs? Trust me, that's a godsend! Also the constant feeling of smooth legs against cool sheets in the summer. That has GOT to be good.

Anything you'd like to tell us that, having never heard of your condition, we wouldn't know?

I did have some mean boys make fun of me, but my friends were amazing and stood up for me when I couldn't stand up for myself. I've had some people over the internet say some absolutely awful things, but it was that kind of anonymous internet hate so it didn't bother me.

Sometimes I hate being bald when I see my friends pull their hair into a cute ponytail. Sometimes I'm super happy that my hair is always perfect, and I don't have to shave. Just depends on the day.

I've had some really funny looking tan lines on my head because of my wigs.

And yes, both those things are amazing.

I just want people to understand that just because someone is bald, they're not sick or dying.

Do you have finger and toe nails?

Yes, but they have little dents in them and are a bit frail.

Has it affected your dating life? Is hair the first card people pull when they get into an argument with you?

It hasn't effected my dating life, just because I've had a boyfriend for three years. We were best friends when I lost all my hair, and he was always there for me. Once my little sister and I were in a fight, and she used the "well at least I'm not bald" line, but she apologized afterwards.

Reddit seems to hate Locks of Love with a passion. Have you ever gotten a wig from them? Do you have any feelings about the charity's "controversies", or about Reddit's disdain for them?

I have not gotten a wig from them. Although, when I was in second grade I once grew my hair out and donated it to them, which is kind of funny now. I haven't looked into it enough to give an educated opinion

ever considered being a competitive swimmer?

I'm pretty awful at sports, although my condition would be helpful as a swimmer. I'm more into astronomy and journalism

Have you ever rotated wigs so they are drastically different colors / styles every day for a week to see how your friends respond? I'd imagine it would be quite funny.

I have a funny story about this. Last year in one of my classes, pretty much everyone knew about my condition besides this one girl. I'd come in with different wigs all the time, not drastically different but enough to notice, and she would compliment my new hairstyle. Every time this would happen, it just wouldn't be a good time to explain that I didn't have hair, so I'd just say thank you. Then one day near the end of the year, she complimented me and I just said, "I'm bald." I didn't mean for it to be so harsh, I just felt bad for never telling the girl. At first she just had that deer-in-headlights look, but then I just explained it to her and life went on as normal.

That was a lot longer than I planned on, sorry

how many wigs do you have at a time? do you change wig styles and hair colour often? how do you clean the wigs?

How many wigs I have at a time depends. At the moment, I have five that I wear. I have some that are SUPER long, and some that are really short. I normally stay with brown, just because I like it the best. I have straight wigs, wavy wigs, and curly wigs.

To clean them, I just put them in my sink and run shampoo and conditioner through it and then rinse and lay it out to dry