Find other people with Alopecia Universalis

I’m 56 and lost my hair to AU at 15. It came back when I was 20 and left again when I was 35 and has been gone (thankfully) ever since.
I count my blessings.
AU is an auto-immune malady (I refuse to call it a disease because it doesn’t make me uncomfortable) but so is diabetes (which killed my dad) and MS (which is killing my sister), so I am blessed.
Body hair promotes body odor. One container of deodorant lasts me somewhere around 9 months.
I don’t have to shave; a fact that usually stops short any smart ass remarks and if the heckler is female, I just show her a hairless calf. Occasionally, I’ll come across the genius who thinks his comment or question has never been asked and it’s usually “So, don’t you even have any hair on your ba**s?” My answer is always the same, “Yeah, I think I have one. Here! Let me give it to you.” With which I begin to reach down the front of my pants (I’ve never gotten my knuckles past my belt buckle). Their reaction…priceless.
Hair is an expensive hassle. Brushes, combs, shampoo, conditioner, mousse, haircuts, etc. etc…kinda gross me out. I can’t be blamed for hair in the sink or hair in the bath drain or hair in the food. I can shower and be ready to go out in less than 15 minutes.
I do wear hats, but that’s so the tattoo I got on the back of my head in 2000 won’t fade. I love my tattoo. I tell people it was there when the aliens put me back and I don’t even know what it looks like. But, I tell them I do remember the probing. They don’t usually want to hear the details about the probing.
Eyebrows and eyelashes would be nice but only to help keep the sweat out of my eyes and nose hair might be nice to help keep the dust and stuff out.
Overall, I see myself as happily hairless. Not only do I not want to be “cured” but I rather pity people with hair. I like to think that we alopeci-ites are the future to which the rest of the neanderthals on earth may evolve. In the meantime, let them eat their hearts out.

I’m an 18 year old boy the just finished his first year in college. I shaved my head early in high school due to giant bald spots. My high school forced me to walk around without my hat on. It gave me stress and anxiety, like there was always someone looking at me. I really hated it when people ask me if I had cancer. I’m hoping someone who reads this knows what I’m talking about.

About a week ago was my first time not wearing a hat for a full day in at least 5 years. It made me feel accomplished and I even had classes that day!!! Just shave it real short and get a nice tan.

I’ve learned to deal with it and it has made me a better person. I overcame it and now I am more caring toward others, and more confident. I feel unique and never talked to anyone else with the same condition before. It was hard at first and then I got use to it. I was very shy and couldn’t make friends easily. I didn’t even get my first kiss until college :) I feel its easy to make friends and having AU makes it easier to get closer and talk to people. I’d like to chat to others that have Alopecia, my email is music4grab@gmail.com

Hello all!
Hey, I’m 57 and apparently, I’ve had something called AU for 55 of them. I just was unaware having no hair had a name.

All my hair fell out within days when I was aged 2. It was tough being a kid in the heyday of the Beatles when all my pals had hair down to their shoulders.
I got called Yul Brynner sometimes at school – which was actually a bit of a compliment. However I didn’t see it then.
I wore a wig between ages 12 and 35 and it was in retrospect a big mistake. You live a deluded life and you actually believe that nobody knows. However (you’ll find out after uncovering) everyone knows – but can’t say. So my advice is: dump the wigs and don’t go back. On the day you do it – It only takes between 9am and about 11:15 am and it’s all over. You are a new person – full of strength. One or two people will come up to you and say “Great you dumped the wig”. You see – they have to live the attempted deception too.
I’ll say, before I dumped it, I went for some hypnotherapy and meditation once a week for about 6 weeks. I had a 12 month plan to do it then I just did it after the 6 weeks.
You have to just get used to the fact that the hair is gone, and isn’t coming back and get to love yourself without covering your head.
If you act with assurance, people will love it.
Yes, your school days were a nightmare.
Yes, People will still talk and insult you – even behind your back.
Where’s the positive in this? You can see who your real friends are.
How shallow is “I married you cos I liked your hairstyle” anyway?
Another point. Say you did have a rich mane of flowing locks: What would you feel self-conscious about then? I know lots of people who fit a physical model of perfection, and guess what? They think that something about them is too big or to small or the wrong colour, or their legs are too long/short/skinny/fat/ hairy.
Other benefits: Cost.
1 monthly visit to hairdresser = £20 = £240 per anum
from age 20 to age 60 that’s 40 years = £9600
That’s several months pay you are saving. That’s a nice new car!
And at 30 minutes a haircut – that’s 10 days of your life you’ve saved!
Something else to Dump: AU. It isn’t a disease or something wrong with you. AU is just a label. Nobody knows what it is. So they give it a Latin Name. They didn’t understand 55 years ago and they still don’t. Think of yourself as an evolutionary step forward.

Another thing: Find something you are good at and become the best. People will identify you as the {whateveritis} expert. Not “that bald person”.
And Hey, when a kid comes up to you in the street and informs you that you don’t have any hair – well, that’s right isn’t it?
The kid is just concerned, and needs reassured. Don’t take it bad or that will confirm the kid’s fears that there must be something wrong. What I say is “Yes, you are quite right. I don’t have any hair. But that’s OK isn’t it?”. And the kid smiles and agrees with me.

What I would like to have is eyebrows and eyelashes. They are quite important in communication. You have to make an extra effort with the non-verbal communications, or else people get the wrong message.

Best Experience?
I like to swim, and trained at an Hotel pool. One evening I got seduced by this girl who thought I must be Duncan Goodhew (Olympic Gold Medal Swimmer). 200m Breast stroke, funnily enough.

Worst Experience:
My best friend dated a rich, successful, beautiful woman. Wonderful, he thought. Except she kept asking him if there was baldness in the family, as she kind of hoped he’d eventually go bald, as she loved the feeling. Well, he’s the hairiest guy in town. Like a bear. Did he introduce us? No. He is a hairy, very jealous guy.

Reading your stories and seeing your photos: You are all lovely people. It’s hard to get over the “why me” feelings. No question about that.
I wish there were more smooth-headed girls going about.

If anyone with AU wants to get in touch, I can maybe be of some help. I would like to help. I ought to help, if I can.

Nowadays, when someone mentions Yul Brynner, I ask “Shall we dance? Cha-Cha-Cha”!

I’m 40 years old, live in North Africa. I had the Alopecia since I was 10 and I had to go through all what you guys are talking about but it seems the older I get the worse it comes to. I’ll explain :On my late 20s I got engaged to a beautiful girl who was pleased with my condition but her parents put her under a hard pressure to break the engagement coz I was wearing a wig they even KICKED me out of their house!!!!! Surprising enough after that incident I got into so many relationships with girls from different nationalities none of them was even bothered about me having no hair at all. I’m married now and got a lovely kid but a year ago when he came to the school age I applied for a so called a good school with professional staff, on my second visit to that school checking if the kid been accepted I saw this statement on my application:” A BOLD FATHER NOT UP TO THE SCHOOL STANDARD” !!!!! For couple of weeks I couldn’t get any sleep with a feeling of being humiliated and discriminated…believe it or not.. my kid was rejected because I have no hair. I’m wearing no wig for the last 4 years, it is more comfortable at sometimes but most of the time I avoid busy places like cafe’s, restaurants, clubs…any public place, people would not feel satisfied staring at me but they laugh and laugh showing me intentionally that they are laughing at me. Even when I stop at traffic lights, people in cars next to me they do the same and sometimes the call me bold out loud and other times it gets to the extend of swearing at me calling me son of …..!!!!!!
I try to make up for my look with no hair by dressing up with the best Italian clothes, shoes, Swiss watches, driving best car as I’ve got a well paid job but it seems not working.
I hate being locked at home.. I only dream of 1 thing: going out without being stared or laughed at.
Do you think this dream will ever come true?
Thanks

I lost my hair in 1995, went online and started meeting more and more of us – it’s now pretty common place for us to meet over the Net and meet up with others in our area, which is pretty groovy.
I have a website: www.AlopeciaBoy.net that helps explain and give tips to those who are new to alopecia or want some ideas.
Cheers from Montreal!
- Nathan.

My name is Cameron Butler and I have had AU for over 16 years now. I was really insecure for a good part of my life but during high school I finally decided to stop wearing hats in school and just be myself. My friends, stayed my friends and anybody that asked me what I had, I answered them calmly without being bitter and explained my condition. People became more and more familiar with Alopecia and I can honestly say I don’t resent what I am because it has made who I am. I probably won’t check this thread very often but if you would like to contact me through e-mail, send to thunklc@hotmail.com or visit my myspace myspace.com/omegasmurf88

http://bloodjournal.hematologylibrary.org/cgi/content/full/105/1/426

While this is a case study, always remember, in the Universe, all things are possible, even a CURE!

Love to All!

well..im 17 yrs old..& im a senior in high school. the only difference w/ me & alot of ppl on this website is that i wasnt born with this it kinda grew on me. wwhen i was about 9 yrs old my father fell ill & i cant remember but my mom says i asked that my father make it through and god could take anything from me. & in return for my fathers health, my long black curly hair was taken. doctors couldnt figure it out & i was finally diagonsed w/ AA and now i have lost every bit of hair so i know have AU.. im still tryin 2 work through it and its hard. i wear natural wigs in all colors..real hair! & i still get the stares and i only told one person. my mom is behind me 100% but i still dnt think i can be behind myself.

Hey..my name is Natasha and I have AU(Alopecia Universalis). I lost my hair when I was 2 years old. I am now 26. I have been this way for basically all my life. I have never before thought about reaching out to others like me. It didnt even occur to me that I could. I choose to be really open and in your face about my condition. I do not wear wigs unless I just feel like doing something different. I made that decision when I was 10 years old. I had moved to another city and was going to start a new school and my foster mother asked me if I wanted to just be myself instead of wearing wigs. I remember struggling with my decision. I thought about how embarrasing it was when some mean kid would pull my wig off just for fun. I decided to just grab the bull by the horns and be me. It was hard that first day of school. Most kids stayed away from me and the others bombarded me with irritating questions. But I made it through. Not that it wasnt hard….but trying to blend in and wear a wig and having it pulled off at the skating ring in front of the whole world was much harder than just putting it out there for the world to see. So it is what it is. People stare at you but you learn to ignore it or if your like me you learn to like it. I use to get down and do the whole why me thing but that just made me hate myself because there are so many kids that had it so much worse. When your different you just have to learn to accept what is and love you for you. Seeing this website and seeing that there are other people like me makes me feel not so different. Seeing that there are young people who just developed this makes me want to reach out and share my storthemselves and ignore the closedmindness of others.

I’ve had Alopecia Universalis for 20 years now. I’m 20 years old. My parents always tell me stories about how I use to have a full head of hair when i was born and how thick it was and stuff, I think they said i was completly bald with no eyebrows or anything by the time i was 1. Starting school was hard because of all the teasing and things but I got use to it although I was in tons of fight as a kid. I thought growing up it would get worst but it only kept getting better. I’ve grown to where i can crack jokes about it, alot of my friends call me mr.clean because I’m bald and have muscles haha. I just want to say that being bald doesn’t make you any different then people with hair, i think its actually made me a better person. My favorite saying is, “what i am not, has made me who i am”. I’m such a stronger person because of that battles I’ve had to face with AU. But thats my story, I hope you enjoyed it :). Thanks.