IamA 19 year old man with Alopecia Universalis. (Completely hairless) AMA!
I believe 5th grade was the end of my swimming career :P
A good friend of mine has this. I first noticed when he had one eyebrow missing. I assumed he passed out drunk somewhere and some friends got to him. He explained, we laughed. He's embraced it, and as a result has a wicked hat collection.
1) Have you played the cancer card yet? We used it on a bouncer once who wouldn't let him in a bar with a hat on. Bouncer felt terrible. We felt mildly ashamed.
2) Have you gone as Dr. Evil for Halloween yet? You don't officially have alopecia until you do.
3) Have you considered a hairless cat? It may also be used as an accessory to question 2.
These are the questions that deserve answers!
Sorry, saw this one earlier, forgot to get back! 1. I have played the cancer card. I have never told people I have cancer, but its pretty obvious when I go to a restaurant and people give me free food because they think I have cancer. I just play it cool, and take the free food :P 2. I have not :( I have gone as Mr.Clean the last 4 years in a row!! Although I could. I can do a pretty mean Dr. Evil impression 3. I have. It is my spirit animal :P
The day you woke up completely hairless, did you find piles of hair?
I did, it was scattered on my pillows and bed.
What is the biggest downside? I'm guessing having no nose hair sucks. Also are there any positives? Like not having to shave.
Biggest downsides? Nose hair, eyelashes, and eyebrows. They are all there to protect your eyes and nose from debris and particles and stuff. I enjoy being bald! I can wake up in the morning and be ready to go! Also, ladies love it xD
As a rapidly balding 25 year old, do the ladies actually love it?
Okay, so I'm in college, and I'm having a pretty decent time with ladies soooo hey man, its all about confidence. Women like confidence. And from what i've read, they realllly like confident bald guys xD
No crotch hair helps too I bet
Its a gift from god, really :D
Can confirm. Am a lady and totally dig bald guys. Of course, I am married to a Wookie who is the hairiest man ever. Such is life.
My nephew was diagnosed with this when he was 3. He still has some hair (that my sister will not shave) on his head, but doctors say eventually he will be totally hairless too.
She's scared that he will be bullied in school and is, in my opinion, way too protective regarding it. How did you make it through the grade school years?
Sorry to hear about your nephew :( for me, elementary school and part of middle school was like a living hell. It's just hard for kids to understand. They will always be curious to different things! GIANT ADVICE : Do not let him wear a hat, wig, bandanna, etc.. to school. This is one of the biggest mistakes that I had made. People wanted to bully me more by coming up to me and flipping off my hat, running away with it, stuff like that. I don't ever want the same thing to happen to anybody. Its like a feeling of helplessness. I was trapped living under a hat even around relatively close family and my best friends, I was too scared to take off my hat around them. I didn't break this need for a hat until i was a sophomore in high school. Other than that, its pretty much just what will happen. Whether its bullying, or simply teasing, young people can't control their emotions and its hard for them. Love and Support. Continuous emotional support. Also, get him into wrestling xD nobody will mess with him once he learns how to beat peoples ass's. That's kinda what I did to get the bullying to stop, got really big, fast, and beat the shit out of someone who flipped off my hat :P
How many slip-n-slide championships have you won?
Three regional championships, one national.
I've known a couple of people through my time at the uni gym who had the same condition as you.
They were both jacked as hell. Are you aware of a community of weightlifting alopecia-rocking men?
Bald guys do tend to be more masculine. I think that's all that it has to do with it ! I wouldn't say i'm jacked, but I'm build decently :P
Are there are other side effects to having AU?
I mean, along with loss of hair, it does effect my finger nails. It looks like someone took a pin and poked the tops of my finger nails lightly. I believe its called nail pitting or something
I actually think you really fucking suit having no hair. As an anxious person myself, I wanted you to know that. And also to remind you that, things that stand out to you like a sore thumb, aren't as noticeable to others and/or people don't care!
But my question is: whenever people discuss alopecia, the common 'cause' is stress/emotional trauma. Because you were 8, this is a difficult question to answer, but was that linked to your development?
Ahhh childhood. Im not sure if the timeline is accurate, but about a year before I lost my hair, my little brother and big sister were diagnosed with Cystic Fibrosis. I haven't even thought about this in the past. Could it have been the stress that my family had felt when my siblings were diagnosed ? Im not sure
How often do you hear Lex Luthor jokes?
That is actually a new one! Ill have to write that one down, thanks! if you want, call me Mr. Clean instead. That's what my entire university calls me lol
To start, I've had scarring alopecia since Feb 2014 and losing my hair has been a slow but bearable process, so I can't even fathom what it was like to lose all your hair in two days. I know it must've been different for you being 8 when you got alopecia, but how did you explain it to your friends? I've been very hesitant to. Initially I covered the bald patches with eyeliner but when they got bigger I had to grow my hair long, so still no one has really noticed it. I hate keeping secrets like this but I'm still uncomfortable sharing it. Do you have any advice on how I would go about doing so?
When I was 8, it was scary. Confusing. I couldn't stop asking myself why this condition had to happen to me. From the time I lost my hair, until sophomore year of high school, I wore a baseball cap. Every day. Which was a realllly bad idea. I was already struggling with the fact that I had no hair, then I had to worry about the fact that at any moment some curious little elementary school kid was gonna come rip off my hat. I'm not sure how old you are, but your friends should understand and support you! Don't be afraid of your friends, or anybody. Like the best thing I can tell you is to be open about it to your friends and family. The faster you can do that, the easier it will be ! Trust !
Anything you own like a champ no-one is gonna mock you for (they might in a jokey way but that's different). If you strut around like an absolute champion and don't give a shit, noone else will
Exactly! Its about confidence. That's all it is!
My question is; how long did it take for you to accept your baldness? It must have been an awful shock. My gf struggled with it for a long long time.
I also have some experience with this disease myself. My girlfriend, aged 21, was diagnosed with Alopecia Totalis two years ago and was then diagnosed with Hodgkins Lymphoma a couple of months later. The curious thing there was that both Alopecia and Hodgkins are related to the autoimmune system, so I don't think it was a coincidence that she suffered them so close together.
She's recently gone into remission and has undergone a stem cell transplant to "replace" her immune system with one grown from donor cells in order to try and prevent her cancer from returning. Now one effect of this immune system replacement is that it's also cured her alopecia. Granted, it's a drastic step to destroy one's immune system JUST to cure alopecia (obviously the cancer was the focus here), but it does work.
Returning to my earlier point. My gf's doctor is currently doing research into the relationship between alopecia and lymphoma as alopecia could indicate an increased risk of developing lymphoma. So, not to scare you or anything, as there's currently barely any evidence to suggest a link, but I recommend you remember to undertake cancer screenings just as often as the average person should. Just to be sure.
It took until I was probably 17. Or however old I was as a sophomore. so like 9 years. I was writing about how I did get over it a couple comments down, it's too much to write here too :P That is crazy! Do you think it is a possibility that the Lymphoma was maybe the thing causing Alopecia ? Even tho the Alopecia was diagnosed first ? I am glad to hear that the treatment worked out!
What is the most difficult thing you come across in your daily life as a side effect of AU?
Some of the difficulties that i come across on a regular basis are a runny ass nose. I'm not sure if its because I don't have nose hair, I don't know. I also get stuff in my eyes all the time. So i often times will have eye drops with me! During the summer, my head will often times get sun burnt, so I always have sunscreen with me :D
If somehow you were able to have hair grow back on only one area of your body, where would you wish you had it?
I would love to grow a nice thick beard!!
Do you get terrible swamp ass in the summer? Sorry to be so blunt, but I realize we may take for granted why we have hair in places where we tend to sweat most.
Chafing ? Yes, but not horrible. Id say just as normal as a person with hair!
Have you ever seen the movie "Powder"?
No I havent, sorry!
Well it's about a guy that looks like you but also he has magical lightning bolt powers. It's a good movie, just trust us.
Ill have to check it out :P
Do you get sick of explaining it to people?
To be honest, it makes me feel about 100x better when I can talk about it.
What do you do in the shower without any hair to wash?
Well, I wash my forhead. How far up? The world may never knowwww :P
Is your big sis single?
Also have you heard of Matt Lucas?
I mean, that's her wedding LOL so no. Yes I have heard of Matt Lucas :P
Have you considered tattooing eyebrows?
It sometimes affects nails and rarely teeth, do you have any of those complications?
It does effect my finger nails. Its almost as if someone took a pin, and started poking the tops of my finger nails. I believe its called pitting of the nails.
Eh, you look surprisingly normal. I thought no eye-lashes might look weird, but it doesn't seem that noticeable from the pics. Do you have any problems as a result of not having hair where you "ought" to?
Aha, thanks I guess ?? Most people don't even notice I don't have eyelashes. The only places I wish I could grow hair: Eyebrows, Eyelashes, Beard.
Do you get spots? My spots generally occur around hairs / ingrowing hairs (the devil). If not, do you believe you are the next step in evolution?
What do you mean by spots ?
I think they mean black heads, zits, pimples etc... These are usually caused by plugged hair follicles.
yes. For some reason I have been growing some like peach fuzz on my face and it has been causing me to break out haha
What color was your hair before you lost it?
Ill post a picture for you guys!
Do you ever have people assume you have cancer?
All the time. Not so much anymore as I am starting to look more like a grown adult, and less of a boy.
How loud are your farts?
On a good day? At least 120 decibels! xD
My sixth grade teacher had this condition, and he was an amazing guy who shared his experiences with the condition and taught me to be more accepting of people who look different. As a fellow 19 year old, i know relationships are a big focus for a lot of people. How have romantic interests played out for you? Do you think people your age really care if you don't have hair?
Good Question! Actually, I started dating this really REALLY pretty girl my sophomore year of high school, and she helped me with everything. I could not have asked for a better person, a better friend to help me get out of wearing a hat, and to help me just feel normal. Unfortunately, her and I split ways about a month ago, after a 3.5 year relationship due to college, and distance, etc.. For the most part, people are very accepting of me. I've noticed that if I am by myself, people may view me as kinda intimidating, I'm a pretty big dude too. I can see why haha! But if I'm with friends and out meeting new people its a lot easier. I have become pretty confident in myself. So I would say no, most people our age do not care!
what about things like the cilia inside the ear used for hearing? Always wondered about that.
You know, I'm not sure. I thought cilia was in your lungs ??? umm where do we find a doctor :D
Does the carpet match the drapes?
I dated a girl with your condition when I was 19. She wore fake eyelashes and wigs and drew her eyebrows on - her fingernails were also nonexistant, so she wore prosthetics of those as well. Honestly, in her full getup, she looked like a hot goth chick.
Have you considered using a wig/fake brows/lashes?
When I was younger, I considered getting a wig. I am glad I did not, because i couldn't ask for anything better than being bald right now haha!
Having shaved my head for years, I can fully confirm that chicks dig a smooth noggin.
Hi! I don't believe they are shut. At random times, I will grow some hair, although it is very very thin and almost white. Its better described as peach fuzz :P Typically I can just pull it out without pain, or irritation to the area. I have noticed some places like where sideburns would be, do get dry. And I do not typically grow any hair in that area
When I google alopecia totalis, is that first picture that comes up you?
To be honest, I had to double check that one haha. But no it's not
Have you considered careers such as art modeling or bodybuilding?
Body building especially. Those guys drop bank and hours of of their day taking hair off. You'd have a natty advantage having all that free time for more gains.
If I had the motivation to become a bodybuilder, I would have been one by now :P
Have you heard of the small clinical study using ruxolitinib? Is this an option for you? And would you even be interested?
Not sure if this would be beneficial for me, since I have had it for so long. I couldn't see myself with hair. If I randomly started growing hair again, I would probably shave it off.
have you ever considered SMP (scalp micro pigmentation)? ( I dont mean it offensively, I had it done and its the best decision ever)
Im not sure what that is, sorry.
It's hair tatoo I believe.
Im fine with the way I look! I look better without :D
wait. you're an alpaca?
Not funny. Sorry not sorry
It's great that you're trying to spread awareness and I love your confidence!
If you could share one thing with people that don't know anything about this disease what would it be?
If I could share one thing with everybody about this disease. hmmmmmmmmmm I wish everybody in the world could identify people with alopecia, as people with alopecia. Its really not cool when people ask us if we have cancer. I was talking to a guy who's 4 year old daughter gets asked on a daily basis if she has cancer. Not cool not cool
Have you ever considered tattooing an angry turtle on your back?
Not on my back, but for some reason I really wanted to get a turtle tattoo. LOL
What's your favorite movie?
Do your eyes bother you a lot? No eye lashes?
Yes. Over the summer when i'm working in the gravel pit it gets really bad.
Do people frequently assume you have cancer? A good friend of mine has alopecia, and a lot of people who don't know her well think she has cancer.
Yes they do. Not so much anymore as i'm starting to look like more of an adult. Yeah :( I don't like that very much. Its like bitch why would you even ask if i had cancer anyways hahaha
Have you seen Arrested Development?
If so what do you think of the way Alopecia is portrayed in the character Stan Sitwell?
I have not seen Arrested Development! Tell me about it
Users, please be wary of proof. You are welcome to ask for more proof if you find it insufficient.
OP, if you need any help, please message the mods here.
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.
we demand pix of OP's balls for proof
Knew someone would say this :P
At what point did you decide not to go into competitive swimming?
Reddit needs these answers!
View HistoryShare Link