Find other people with Alopecia Universalis (read all 10 entries…)
Bald to the bone 5 years ago
I’ve had Alopecia Universalis for 6 or 7 years—but I’ve only met a couple people with AU in that time period. Alopecia Universalis involves complete hair loss. There are three types of Alopecia :
  1. Alopecia Areata (patches of hair loss)
  2. Alopecia Totalis (no hair from the neck up)
  3. Alopecia Universalis (completely bald body)
I’m not looking for a support group so much as a group of people to discuss certain aspects of the disease and to get/give advice. My three biggest questions:
  1. What percentage of AU people get their hair back completely?
  2. Do others get baby hair in places (I get little blond hairs on the top of my head)?
  3. What percentage of the population has AU? I think it’s about 1 in 10,000 people.
The advice I’d like to give other people:
  • Taking 2,500mcg of Biotin a day has really helped the strength of my nails—amazing really
  • headbands work well for keeping the sweat out of your eyes when running or exercising – and bald people with headbands look cool in my opinion ;-)

Alopecians unite!



Comments:

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(This comment was deleted.)

Biotin

Hey Dennis—if your nails are getting weaker you really should try a large daily dose of biotin. It’s harmless (or so I’ve read) and really does help with strengthening your nails. Good luck.

My Boyfriend Has AU

Hi, my name is Brianna. I don’t have AU…but my longterm boyfriend does. I can answer one of your questions and say that he does grow those little blonde looking hairs as well…it seems to be common. He lost his hair around the age of 13 and he has not had it return since he is now 25. I have absolutely no problem with him having AU I actually love it if anything. It is a part of who he is and I love him and everything about him. I know some of the difficulties with dealing with having AU through him. It makes me sad to think that sometimes he thinks one day I will wake up and change my mind about it and not be okay with it. He is still in need of accepting it and I try to do my best to help him with that. He constantly fears that his hair will come back and living for so long without it it is understandable why he feels this way. He is also in fear of it never coming back at the same time. I was wondering if anyone has any advice or can give me their perspective to maybe help me understand him and the trouble he has with accepting it.

Hi Brianna. Thanks for the blonde hair tip. I was wondering if that was true of other AU’ers! I heard from another that they, too, grew litle blonde hairs. Good to know.

It sounds like 3 issues with your bf:
  1. he fears that you’ll not find him attractive
  2. he fears his hair coming back
  3. he fears his hair never coming back

You seem to have pegged it—he’s still (understandably) struggling with accpeting his self image with Alopecia Universalis. You’re supportive of him and obviously find him attractive and there’s not much more you can do to convince him that he looks great.

I suspect that folks who get AU at a younger age may have a more difficult time with it in a way. In my case, I got full blown AU around 29/30. That was 8 years ago. But I went through adolescence, puberty and all that as a normal genetic kid. I can imagine that skipping the hair part(s) of that while everyone around you grows up could be difficult. In my case, I’ve had a full beard and such—been there done that. So, I don’t feel like I missed out.

I don’t know if that helps much, but my gut instinct tells me that he may have insecurities based around losing his hair during the transition from adolescene to adulthood. If that doesn’t sound right it may be time to call in Dr. Phil.

Self image is a tough one because it’s a battle mostly waged in our own head. It sounds like you’re doing as much as you can. The rest is up to him.

heya

t i always think ill never get a boyfriend bcoz of my illness but the fact tat u r wit him n dont care bout it at all really inspires me tnks a mil xxx

in New York with AU

I am a 35 year-old woman and I am bald.

Like millions of Americans (4.5 million, to be exact), I suffer from an auto-immune condition known as alopecia. To some, alopecia is a hair loss disorder that effects small patches on their scalp hair, or eyebrows, and can be treated with steroid injections. For millions of Americans, however, this is a disfiguring disorder that sometimes means full and permanent hair loss for the rest of their lives.

Upon returning from a two-week trip to Ireland in the spring of 1995, I started losing my hair, first in strands and then in massive amounts. I went from wearing a baseball cap to hide the loss on a Friday to wearing a bandana on a Monday, because the hair loss was so significant in just those few days.

While I reached out to numerous doctors, including infectious disease doctors, internists, specialists and finally, dermatologists, no one could give me definitive answer as to why my hair was falling out and if it would ever come back. And then I started to lose ALL of my hair. First my eyebrows, then arm and leg hair, pubic hair, and eyelashes. To this day, 12 years later, I only have ever grown back a minimal amount of hair, and have regrown nothing on my head or face.

This has been a devastating, life altering thing to deal with. And I’m not alone. By sharing our stories, we can share the affect this condition has on people, what life is like when your identity changes and friends to see at reunions or family members you see at weddings don’t know who you are. The way you are scene by society changes; the person interviewing you for a job thinks you have cancer (if, you are like me, someone who does not wear a wig); etc.

I like, so many other people living with alopecia, have years of stories, about their experiences with this disorder, disease, condition. I hope to share those stories with you some time. Some of funny, others are interesting, the remedies I’ve tried (once put habanero peppers on my head, an old wives tale, and have had as many as 100 needle sticks with steroids to promote growth) have been painful and useless, the doctors I work with are mystified but hopeful. There is no cause, and there is no cure. But maybe by telling our stories, people living with this disorder can again find some hope and some understanding from those around them, their co-workers, their sisters, and their mothers.

welcome aboard

For what it’s worth, you look great! Agreed that people look at you different (particularly if you’re a woman) when you go totally bald. And there is something different about the AU look with the absence of eyebrows and eyelashes.

As a man, it doesn’t really affect me much. The only time I notice my self-image creeping in is perhaps taking off my shirt to go swimming around people that don’t know me—or dealing with people who stare a bit when I take my glasses off. The glasses in general hide the no eyebrows/lashes thing.

Details, but I’ve been growing hair back a lot the last 2 years. More just nuisance hair in patches on my head and chest. It’s not really useful, but there it be.

Okay—hope all is well with you. Rock on.

Pierluigi Collina

I read about the world’s greatest soccer referee in the NYT today:

http://nytimes.com/2005/02/19/international/europe/19profile.html

A Soccer Superstar Prepares to Hang Up His Whistle
By JASON HOROWITZ

VIAREGGIO, Italy

PIERLUIGI COLLINA, Italy’s most successful soccer star, has never even come close to scoring a goal. Yet his icy glare and head as bald and polished as a doorknob have made him one of the most recognizable figures in the world’s most popular game. Not as a player, but as a referee.

“That’s not always helpful,” Mr. Collina, a 45-year-old financial adviser, said of his conspicuous pate, which has led to his being called everything from Nosferatu in black shorts to soccer’s bald beacon. “If you were doing a poor job, everyone would know it was you.”

By most accounts, Mr. Collina does not do shabby work. The international soccer federation has named him world’s best referee in six out of the last seven seasons, during which time he has officiated the finals of the World Cup and other top tournaments. His swift and fearless dispensing of justice on the field, and the aplomb with which he throws the book at the most pampered prima donnas on the world’s most revered teams, has made him a cult figure for millions of fans.

At the 1996 Olympics in Atlanta, the entire Chinese team came up to him after a match, one by one, seeking autographs and pictures with Italy’s unlikely idol. “Even an injured player came hopping off the bench,” he said.

But despite the accolades, this may be the last season for soccer’s reigning lawman. The international and Italian soccer federations have a 45-year age limit on referees, which means that Mr. Collina, whose birthday was last week, will effectively be benched after the season’s final whistle blows in June.

“If they don’t change the rule, it would be a shame, because Collina is a real treasure for the sport,” said Tullio Lanese, the president of Italy’s referees’ union, which is currently lobbying to raise the retirement age to 48. “When there is a great athlete, he deserves a chance.”

Mr. Collina refuses to talk about efforts under way to change either the international or the Italian rule. But in his 2003 book, “The Rules of the Game,” he wrote that the prospect of having to call it quits left “a bitter taste in my mouth” and that age discrimination against arbiters was “a real pity” for soccer.

That book, translated into nearly a dozen languages, including Greek and Japanese, competes for space with dozens of trophies in his modest home in this seaside town. Mr. Collina, dressed in dark jeans and a black sweater, sat for a light lunch of pasta and pears before his training session on a recent afternoon.

INTENSELY serious about refereeing, which earns him more than $200,000 a year, Mr. Collina works out four days a week. Before a match he also reads up on the players and spends up to 15 hours watching tape. Tall stacks of soccer videocassettes make a skyline on the television in the living room.

“You must know everything,” he said. “The tactics, the skills of the players; for a referee it is important not to react to something, but to know what is going to happen. Reacting is too late.”

He also claims to have an innate resistance to anxiety, and credits nerves of steel for getting him through everything from economics exams in college to championship matches.

That mix of confidence and concentration has prompted corporations like IBM and Unilever to hire him as a consultant to help develop their employees’ decision-making skills. His on-field performance, business savvy and distinctive dome have led to endorsements and appearances in television commercials, music videos and even a fashion show.

They have also made him a somewhat peculiar icon for Italy, a country where court rulings are rarely final and where Prime Minister Silvio Berlusconi has characterized judges as lunatics.

“I don’t make bad calls,” Mr. Collina said, explaining why a recent dinner with Mr. Berlusconi, who also owns one of Italy’s top soccer teams, was so cordial.

Not everyone agrees. Fans of Juventus, the New York Yankees of Italian soccer, charge that Mr. Collina is biased and say he has cost their team matches and championships.

“The more you rule against Juventus, the more famous you get, and Collina wants fame because he wants sponsors and money,” said Sergio Vessicchio, the creator of the “I Hate Collina” Web site, which has registered more than 200,000 hits over the last two years. “He makes more mistakes than anyone, but no one says anything because he is now considered a national treasure. Give me a break.”

Despite such criticism, Mr. Collina has consistently received the highest profile assignments in soccer and, for the most part, enjoys his country’s esteem.

After Mr. Collina presided over the World Cup final in 2002, the president of Italy, Carlo Azeglio Ciampi, honored him for exporting a positive image of Italy to the world. (On the other hand, the country’s star player, Francesco Totti, was thrown out of last year’s European Championships for spitting in an opponent’s face.)

On the field, Mr. Collina’s approach to refereeing ranges from laissez-faire to rigorous interventionism, depending on the demands of the game. If the players abstain from kicking one another’s shins or faking injuries to draw fouls, he is willing to silence his whistle and let them play. But when he senses that a player is trying to put one over on him, his blue eyes can pierce like ice picks, and his slow gait toward an offending player has left many a grown man quaking in his cleats.

Aldo Biscardi, the host of one of Italy’s more popular soccer talk shows, called Mr. Collina “one of the greatest of all time,” citing his unwavering independence on and off the field. “There is a problem in Italy that the referees give too many calls to the big clubs,” Mr. Biscardi said. “The big clubs don’t love him, but he couldn’t care less.”

THAT respect for law and order was instilled in Bologna, where he was brought up by his mother, a schoolteacher, his father, a clerk at the Ministry of Defense, and the strict nuns who taught in his grade school. He refereed his first match at 17, and immediately took a liking to dispensing of justice on the field.

But some players started contesting his authority when, at 24, Mr. Collina developed Alopecia Areata, an autoimmune skin disease that causes hair to fall out of the body. “Some thought losing hair could be a problem for a referee. I showed that wasn’t true,” he said. “Plus, I save on hair products.”

Since making it to the Italian big leagues in 1991, he has used his silver whistle to humble the world’s highest-paid players and then whittled away countless hours in locker rooms waiting for angry fans to go home. He has forced fascist hooligans to take down racist banners, and dodged water bottles, flares, smoke and concussion bombs launched from the stands onto the Italian fields.

It is clear that sitting around the house and waiting for his future to be decided does not suit Mr. Collina well.

“If you are used to taking decisions, it’s not easy to let someone else take them for you. You don’t have the last word,” he said. Later, after his wife rebuked him for coming home late to lunch, he added, “At home, the only one who accepts my decisions is the dog.” (END)

Collina

I’d heard about this Collina—even seen a picture one. Thanks for forwarding the article. He seems as interesting off the field and on.

Searched for Collina and found Daniel Spils

Hi Daniel,

I was searching for info on Collina because everyone says he looks like me! And whilst looking, I found your site.

I have suffered (if you can call it that-not much suffering really) from AU since I was 28, so 12 years now. First three months were stressful, since then it’s been smooth sailing (excuse the pun!). I think it has even been an asset in my consulting business, making me pretty memorable to potential clients after only one meeting :)

In answer to your questions:

1. What percentage of AU people get their hair back completely?

Don’t know, but once you’ve been hairless for two years dermotologists seem to consider it permanent because it very rarely grows back after that. So there’s a distinction between AU and permanent AU.

2. Do others get baby hair in places (I get little blond hairs on the top of my head)?

Yes, very common. They’re not actually blonde, but pigmentless, and they don’t have normal roots, just little bulbs. They are known as ‘exclamation mark hairs’ and they pull out pretty easily. I get a few on my head, but many on my chin and I have to shave a bit every couple of weeks.

3. What percentage of the population has AU? I think it’s about 1 in 10,000 people.

Opinions vary, but my dermotologist told me that as many as 2% of men and 1% of women in western society suffer from some form of alopecia areata. Then about 2% of those have totalis or universalis (so about 1 in 2,500 men), but then only 2% of that 2% have permanent totalis or universalis (so that makes 1 in 125,000 men).

So we’re part of a select group, you and I, who spend less on haircuts and ‘product’ but more on hats and sunscreen. Speaking of which, I hate hats because we baldies sweat in them. Not such a big fan of headbands either because you still get a big wet patch on your head, but bandanas rule. The bandana is a bald man’s best friend, and the headsweat is the modern bandana (http://www.headsweats.com). Check ‘em out.

If you want to chat about AU further drop me a line.

Clive
www.eebahgum.com

Is it “to baldly go” or “to go baldly”?

Bald brother!

Great to hear from you, Clive. You succintly answered every question I’ve ever had about AU. Give biotin a try if your nails are weakened—it’s been a great help to me.

I agree that the first 3 months were an adjustment, but I’d never go back at this point. Being bald has been a nice change for me—and yes it makes you a bit more memorable.

Thanks for taking the time to respond to my post. Hopefully others will find this little corner of the internet.

Bald and Loving It

I am bald by choice, but it is because I started to loose a spot on the side of my head…and other spots on my chest and an area on my leg…I have since regrown those spots except the head. At one point my brows thinned, but they have since returned with a vengence. I shaved them off a couple of times, but they seem stable now. My nails went through a brittle stage, but seem to be normalizing, especially on my hands. I was never diagnosed with Alopecia(my doctor wasn’t sure), but it seems I have had some similar occurances. I tweeze my scalp, so am hairlesss because of that, but I love the bald head look so I am content to stay that way. You really look fantastic hairless! It is who you are and you should flaunt it proudly! I am certain you do!

(This comment was deleted.)

Another AU in Seattle

Dear Daniel,
I ran across your site while looking for a decent wig maker in Seattle, not easy and easy task. However, I’ve been bald with AU for 19 years and it hasn’t been too bad.

It’s a bit more difficult for women considering all of the vanity issues we live with, but wigs are a lot of fun. I love being a red head, they have the most fun.

When I was in the Army, the other soldiers thought I was HOOAH for shaving my head. I gave up on explaining my situation all the time, but they just thought I was hard core. Remarkably being a bald female was an asset—I had finally found a place where being bald also meant that I was cool!

tough for women

Agreed that it’s much tougher on women simply because of the social mores in place as it relates to bald women. It’s pretty natural anymore for a man to be bald.

I like the Army angle – never considered that would be a place that folks would accept a woman’s baldness as “cool”. I should also mention that I bumped into a 27 year old AU lady in Northern Cali a few weeks back. She was totally bald and not wearing a wig or head scarf. I’m forgetting her name – but she looked great. She told me she lives in Manhattan and does wear wigs a lot of the time. However, she goes bald some of the time and she claims that being in a big city allows for a bit more freedom in that respect. You stand out less and people tend to have a wider range of what’s acceptable and attractive for a woman. Anyway, just a story.

Good luck finding a good wig maker. There’s a NW AU group that meets every couple months. I haven’t been in years—but the lady that runs the group is named June Secreto. Let me know if you need her contact info. I know they spend a lot of time exchanging cosmetic tips about local wig makers, tatoo artists that apply permanent eyeliner, etc. Thanks for dropping a line!

bald to the bone

hi i am also bald to the bone i used to wear wigs but really like the shiney bald look and enjoy being totally bald. would also like to meet other alopecians. there are a few who live locally but have never spoken to them

welcome

Good to hear from you, Jeff. I attended an Alopecia support group meeting at Virginia Mason a few years ago. It’s organized by June Secreto—a great person. At any rate, the meeting was about 35 people. All were women except me and another fellow. For obvious enough reaons, men tend to opt out of meetings once they get the facts.

My hope is that this thread becomes a nice place for people to exchange any info they have about AU that seems hard to come by. The comment further up this thread by username: picard2bridge was particularly insightful.

heya

hiya im fully bald to!!!i wear a wig all the time part 4rm in my house!!!i have very little confidence to go out bald!!!but all my friends know bout it!!!its the hole boy thing tat bothers me all my friends have seen me bald inclding some of the boys but i think im at such a big loss wen it comes to getting a boyfriend hair is one of the things they look for or is it????

there's someone for everyone

babybaldy07 – nice to hear from you. I can understand that some boys may not know what to make of a bald girl—but I guarantee you that there are dudes out there that will get it and enjoy your bald look. For real.

Keep your head up and be bald and proud! You look great.

Bald to the bone in Bulgaria

Hello Friends,

I’ve lost my hair 9 months ago. It is Alopecia Universalis! I won’t say about all the depression I was into but I am getting mad for another thing! The most terrible thing is not understing to the problem in my country. I can’t find work. Even with wearing a wig, once they learn about they stop calling you. What is our fault about? Does anyone knows International site for us or fondation to take care for and giving us a chance? I still have my 8 years old boy to take care for and being without work can be awful…I will be thankful if someone can help me with a link!

Welcome

Sorry to hear that employers are discriminating against you based on your baldness. How silly is that?

I think you look great! The English site/foundation I’m most familiar with is NAAF. They tend to have the most information and resources. Perhaps there’s a chapter in Bulgaria.

Alopecia Universalis takes some adjustment time, but you’re totally healthy and people have to become accustomed to your new look. Good luck and remember this: women look great bald, too. I bumped into a attractive 27 year old Alopecia Unversalis gal in California a few months back. She didn’t wear a wig and she looked gorgeous. Tell that to your next prospective employer!

Wow

Thank you for the kind e-mail! Please don’t forget that I am wearing a wig here! But anyway it was very sweet of you, I will try the link and see…
thank you again good luck and all the best to you!

heya

heya im 14 i tried getting a job in the leisureplex in dublin/ireland!!!n they took me on but after a while i had to put my hair up in a hairnet n im not able te do tat…..it was such a gr8 job had such nice people there but i had to give it up bcoz i was not able te go into the kitchens!!!i h8d tat part it not our fault we av au!!!!!!!!but ah well!!!im not able te help u wit a link tho!!!!xxx

Miserable..........

I have had Alopecia Universalis for 15 years….One day I was taking a shower…and I got out, looked in the mirror, and ALL OF MY HAIR WAS GONE…...(

I was getting ready to go to my job as a TV on-air Meteorologist…in a U.S. city….I was on the news, as the morning and noon TV Meteorologist, for the TV station..

To say the least…I could not keep my job (I was in shock)..and 15 years later…after bouts with severe depression, panic attacks, thyroid problems, and an almost killer heart event…I am in MISERY….

I was a very good looking guy…had a great life…......NOW, I am ALL ALONE, no friends, no career, no money, no car, my family has deserted me, and I have ZERO confidence…I might as well be gone from this planet…I have “no life”....This is the wost thing that could have ever happened to me !! IF I lost my legs, I would be in better shape….My looks and appearance were so important to me (my career and myself).....I am not vein….I have BDD (Body Dismophic Disorder)...and I focused all my attention on my HAIR, for my whole life…It, always, had to look perfect…BDD is , actually, a mental condition in the DSM-IV psychiatric handbook….Many people who have several plastic surgeries have it….

So, I am ALONE , again, TODAY…and everyday..MY life is ruined and I couldn’t be more lonely and “destroyed”.......I have no idea what to do…I have tried everything…I do wear a wig….and I use make-up to draw in eyebrows….but, it is very hard to live DAY to DAY…....I am sorry if I sounded so HORRIBLE…but, I feel horrible…...........

Thanks Daniel!

I’ve been looking for some hope today on the net about AU. It’s been really hard trying to adjust to this drastic change (no hair or nails) for my 30 year old body. It’s been nine months and i’ve been hoping and praying that my hair will come back. I feel really angry more than anything. Can you give some feedback.
Sorry for being so negative, but around my family i try to be positive and i’m really hurting and angry inside. Thanks

I’ve had AU for 8 years. But I probably had alopecia areata for a couple years before that as I didn’t realize the spot on my beard was baldness—thought I’d cut myself shaving. But when full AU kicked in it spread fast across my face. That took a few months. Then I got spots on the back of my scalp and it spread throughout my body very quickly (within weeks).

I’ve heard of AU people getting their hair back – usually very quickly. It’s a bit of an on/off switch in the body. But I’ve also heard of these same people returning to an AU state. Sometimes years later. Myself, I’ve had random hairs grow back but I’m still 98% totally bald. So, I’m assuming it’s here to stay. And I’ve read that the longer you have it the more likely it will be permanent.

One thing I noticed in the first year was that my fingernails became very weak. I never lost my nails like you have. I began taking 2,500mcg of biotin a day and in under 2 weeks my fingernails did a 180 turn around. In the last year I’ve stopped taking biotin and my nails have been just fine—but I suspect that the initial AU phase was a big shift in body chemistry and my nails seemed to suffer disproportionately early on. AU is an auto-imune disease and similar to many diabetics (also an auto-imune disease) my nails now have ridges and about half their original integrity.

I’ve heard of extreme cases like yours where folks with AU lose their nails. You may try taking biotin daily. I’ve found no documented side effects and it either solved my weakened nails issue or my body started repairing itself at the same time I started taking biotin. My gut tells me it helped a ton.

So, where’t that leave you?

It’s a slightly different set of issues for men vs. women (not sure which you are) – simply because of social norms surrounding bladness. Women have it harder in that sense. Although the women I’ve run across in the real world with AU (there have been 3) have all been super confident and all chose not to wear a wig or headscarf. They look great to me.

As a man, I only feel odd anymore:

  1. when people don’t know I have AU and tell me they assumed that I plucked all my hair out – so I tend to bring AU up with people in a fun way simply so they don’t think I’m a hair plucking freak ;-)
  1. when I take my glasses and shirt off to go swimming and people notice the complete baldness (no underarm, chest or leg hair). Some people stare.

I’m actually over #2. #1 is probably more in my head – for some reason I get weirded out by thinking that people think I could be that obsessive compulsive.

One thing I’d say is that dealing with AU is really about redefining your self-image. And to the degree that you can convince yourself that baldness is awesome the happier you’ll be. That may sound like self-induced brainwashing, but I’d submit that all humans play that game.

If your hair comes back … fantastic. In the meantime, jump on the bald bandwagon and know that there are others like you who have been through the adjustment and feel great about how they look now. It’s been 9 months for you. I think you should set a goal of being way more secure in your looks by the 12 month mark. Without seeing you I can safely say that you probably look awesome bald (enough disclaimers in that sentence?).

In the future scientists will look back at people with AU as the forerunners to the genetic advancement of the species ;-). Hair is so pre-22nd century.

Bald truly is beautiful!

Can u live in KY.... we need u here!

Daniel, I appreciate your attitude. It is full of vitality and spirit! I’m definetly in the adjustment phase and I like that ‘setting a time for gettting out of this phase’ idea. I don’t want to stay here to much longer. I think a part of me just wanted to be angry. Oh well…... I feel really great today, I looked on the website www.boldisbeautiful.com and got so much strength from seeing those beautiful women and their positive attitude. I went home and took off my wig and just looked at myself in the mirror. I look pretty good!!!! I told my mom that i might make the decision to go bald….... she looked at me like i was crazy. I know whatever I do, this will continue to build courage in me until I don’t care what the heck people think…. I’ve needed that. God always brings something good out of the bad things that happen to us. I know He will use this for good. I’m keeping the faith…

On your way to being fine

You’re doing the right thing by getting used to being bald. I guarantee you that in the near future you’ll look back at this with a bit of “what was all the fuss about?”. I’m not minimizing the adjustment, but when the attitude change clicks in your brain you’ll be unstoppable.

I suggeset you find a friend that you’re super comfortable with and go out bald one day for coffee. Get used to people looking at your head and also get used to giving the 15 second explanation when people (inevitably) ask how you get your head so smooth. It’s good if you rehearse an answer that relaxes people and doesn’t embarrass them or you. That’s where it can be an asset—it’s a good piece of conversation in my experience.

When people ask me how I got bald or how I get my head so smooth I typically tell them:

I have Alopecia Universalis. It’s a genetic condition and a fancy way of saying ‘I don’t have any hair … anywhere’. Other than no hair and weaker nails I’m as healthy as a bald ox.

Then they usually apologize and I immediately tell them I like talking about it and thank them for asking. Otherwise they may feel like they’ve hurt my feelings, which they certainly haven’t. And I don’t want to feel like a sick puppy.

At that point the Q&A can get pretty interesting and open people up. The on/off switch analogy fascinates people—and the fact that you can get all your hair back in 3 weeks without any notice.

Here’s a goal suggestion: within the next 3 months go out with a friend you trust at least 6 times without a wig or headscarf. Practice your AU explanation on people. Have fun with it!

Alopecians are sexy!

Dear Daniel,
First – my hats off to you for starting this AU blog. I think it’s great!

I do not have AU personally, but my beloved “huz” (aka husband) does. I think he’s so sexy too!

I remember before we were married & had been dating for quite a while and the subject hadn’t come up. Then one day it did & I don’t remember exactly how, but my huz, Jeff, began to tell me his story and history with alopecia (started around age 10 with clumps of hair disappearing). I clearly remember feeling so terrible for him as he told the story & could not even imagine the roller coaster he had been through as a young boy & brother to 3 other “hairy” brothers.

Once he finished sharing his story; of course I had questions – like….how do you spell alopecia? etc…etc… He was all good with our discussion & at some point during said, “hey, what if I had a life threatening disease or something & that was the reason for my appearance?” “What would you do?”
Without hestitation I assured him that I’d be in the exact same place I was at that moment – next to him & loving him no matter what. I meant it too!

So here we are, present day, 7 years later & we’re very happily married and I thank God every day (or almost – to be honest) for bringing us together. He has been such a blessing to my life & I have never known any person even remotely like him.

He too, like some of the other AUers, get the light colored hairs on the top of his scalp, as well as random, dark hairs as well.
Early in our marriage he had a goat, a mustache, eyelashes & two full eyebrows. Then approximately 2 years ago he chose to shave his goat & mustache off during the summer for comfort/convenience reasons. He’s an avid cyclist & trains in the heat & humidity of Texas & thought it would be a nice break to take that summer off from having a bunch of “stuff” collect in his goat & mustache while training for upcoming races. Then he’d grow it back in the fall. Well, when he tried growing it back, part of the mustache wouldn’t grow in & he had a spot in the goat that wouldn’t grow back in as well. Oops… So, he thought it didn’t look too cool to have the blank spots in the goat & mustache & shaved them both off. Not too long after that – probably 3 to 6 months, both eyebrows & his lashes slowly all went away. So I guess, from reading what I’ve read on alopecia, he must’ve gone from AT to AU at that point?

He is still so sexy to me! I try to tell him that as often as possible. Like when I notice he’s looking extra sharp or sometimes I just glance at him & rub that smooth, sexy head & tell him he looks so good! I do it when I actually feel it too, ‘cause I want it to be genuine.

He wears glasses like you do & I think that really helps him with the AU. He has fun with it & always tries to get some really cool frames (sometimes even turns cool sunglass frames into RX frames – which helps create a unique look).

cool dude

I somehow missed this post, but yours is a great story. I, too, wear glasses and call them my “portable eyebrows”. It’s an easy way to frame a blank canvas face. But the more you get used to the alopecia look the more normal a bald face looks to me – I don’t skip a beat when I meet someone with alopecia. And I’m secretly (well, no longer secretly with this comment) a fan of complete baldness. After a few years I love how it looks. Tell your hub he’s 200 years ahead of his time genetically speaking.

Rock on!

Dude, thanks

I’m not sure how to say some of this. I’m 47 and never had a problem with hair loss—always been lucky. Then last summer someone asked me who cut my hair last because they butchered me. The two bald spots on the back of my head started to spread, and things started looking weird. By thanksgiving it was real bad, and the next monday I wore a mohawk into work, well, what I could muster of one. Three days later I shaved it all off and that was it. I now have no hair anywhere, no eye lashes, nothing. Well, a little on my knees and feet of all places.
I spent the last two weeks watching my left eyebrow disappear, had sort of a mono-brow for a while. Not the uni-brow, definitely mono. I tell a lot of jokes about it, and even that I joke about, I say joking is my defense mechanism about my defense mechanisms.

I know, these things are much more devastating when you’re younger. Even at my age there are self-esteem issues, mostly because my sense of self has changed so much. But one thing, I’ve always liked to be different, didn’t care about fitting in necessarily as much as being set apart from the crowd. And this certainly does it.

For me the big thing is this: it happened so fast, and has just finished ravaging my body, albeit quite painlessly (at least physically), that I’m afraid that it won’t stop with the hair… that my immune system is going to go after my teeth next, or something. They keep telling me it won’t, but when you get older you stop feeling invincible and start looking down the barrel of age.

All I can say is this: the younger people that go through this, the women that go through this, it gives you a look at life that few others get. It’s a weird thing because I hear so many people say “you look good like that” and “it’s only your hair.” So many men go bald in the usual way, and so we should be able to go through this with no problem. My doctor even told me that it’s really fairly common, but I haven’t seen any in all of the humanity that has passed before my eyes.

Anyway, I think anybody that has this condition has a perspective that few people have, and I wish you all well.

Harry (ironic, eh?)

BTW, I have learned to do one hell of a good Yul Brenner for the 10 commandments—“Let the name Moses be stricken from every tablet and temple…” A real crown pleaser.

Yul

Hey man -

Good to hear from another fella. I have a similar story to yours – got AU when I was about 29 (so later in life). I can tell you that I had the same fears about the auto-immune bit going further than loss of hair and, in my case, weakened finger nails. I’ve questioned a nationally-recognized expert doctor on Alopecia a few times and my dentist many times. There is no link between Alopecia Universalis and other conditions like weakened teeth, gums or other body tissues. So let me put your mind at ease! Nine years on this crazy train and I can tell you that you shouldn’t worry about other types of auto immune issues. Your teeth and other bits should be healthy.

My mother used to worry about it when she saw my drastic hair loss. I couldn’t blame her – at first I appeared sick because the change was so radical and so quick. The best saying I could find to describe the situation so her mind wouldn’t run wild is that “I’m healthy as a bald ox”. That is, I’m bald as shit but as physically sound as I was before. Hope that helps. Good luck!

SaraLuWho wants her 43T anonymity back.

Hullo there,

Hi guys, I’m Sara, mom to JD, (above with his cousin Chris) who has Down syndrome and AA. He’s four, started losing patches for sure about 18 months ago, (but possibly on and off for longer) and gradually kept losing hair til we started doubling up on some supplements… then when I started using sunscreen (with zinc) on his pate this past spring, hair really started growing back – first downy fuzz then more regular, dark hair. I’d say he was down to 15% remaining, now back up to 40% on his head. Slowed down when I cut back on the sunscreen. Probably just a coincidence, but that’s what I observed.

Since he has Down syndrome (DS) and, like all auto immune diseases, Alopecia is more common in the DS population than in the general population (lucky us), I have found some interesting links between zinc deficiency and thyroid function – both common with people with DS – and thyroid function and hair loss. Curious if the zinc could have a more direct link to hair loss. Wouldn’t it be amazing if topical zinc had some connection – sure seems to stimulate his hair follicles. Has anyone ever seen that connection questioned before? Haven’t tried the Biotin but some other DS moms whose kids also have AA have recommended it.

Also curious if any genome mapping results have turned up any genetic links to Alopecia. I have to get on top of the research.

I will probably post more another time, just wanted to pop in and say hey. I’ve been meaning to since I first saw one of your posts a few months ago.

Sara

zinc

Jericho is a cutie! Your post is the first I’d heard about zinc deficiency, thyroid function and AU. Interesting. If you dig anything up post a new entry so we can dig into the issue.

It’s hard to isolate what may be the zinc at work and just the randomness of the disease but sounds like a worthy path to pursue.

Hope all is well.

- Daniel

(This comment was deleted.)

supplements for treating AU?

I’d be REALLY interested in supplements and/or prescriptions for AU. I’m 56. All my hair fell out within 2 weeks 7 months ago. this really is the worst thing that’s ever happened to me. I’m into holistic remedies so if you could let me know the names pf those supplements you mentioned, I’d really appreciate it. I’ve tried biotin, Vitamin D, extra Vitamin B, steroids – I’m thinking of trying UT (urine therapy) but I know it won’t work unless I’m consistent and I’m not sure I can do that consistently. At the very least, I’ll try putting it ON my head…What you said about Th2 was really interesting and I’d like to know more about it.

supplements

Hi RJK,

I’m not aware of any supplements other than biotin for strengthening fingernails. Here’s where I got my 2500mcg of biotin. I took one pill a day and at the time it really seemed to help strengthen my weak nails.

As for other supplements, I haven’t heard of anything helping other than steroids injections by a doctor, but my understanding is that works when it’s not full-blown alopecia universalis. People I’ve heard of doing steroid injections have said it’s like putting your finger in the damn. Probably good for eyebrows in some cases, but not an effective overall solution for AU.

I’d be careful about doing anything that sounds like quackery. It’s basically a condition you have to learn to live with unless it reverses itself. There are all sorts of sleezy schemes on the internet that claim to cure AU. They’re all bunk. Urine Therapy sounds particularly misleading.

Welcome aboard the AU train – hope things work out.

Hello all

I have AU. It started about a year ago. Took 3 months for everything to fall out. Prefer it to being the hairy beast I was before. I think it is beautiful and am glad that God felt this was necessary.

HJC helmet

Hey Geoffrey,

Good to have you aboard. I, too, kind of prefer AU from hairy. Is that a motorcycle helmet in hand? I also ride.

DAniel

Grüezi

I’m 27 and about becoming an AU at the moment. It all started 9 months ago. Right now, I’m loosing all over my body hair, guess without any concept anymore.

So these are my burning questions:

- Where do you get this pure Biotin?

- Although I’ve a very good dental care, I’m suffering for months from slight gum inflammation, actually it’s not always at the same spot. I don’t take any medication anymore. Does someone know about a relation between this and AU, apart from being inflammations?

- Do you also believe, that AU can happen to anyone, without having any serious psychological troubles??? Because, unfortunately, in articles it’s often connected to this.

I think that does it for the moment. I was happy to find your site!
Sandi

welcome

Hi Sandi,

Here’s answers to your AU questions:

1) I found the 2,500mcg of biotin here but I’m sure you can find is other places on the internet or in health stores

2) My understanding is that Alopecia doesn’t affect teeth or gums, but you may want to ask a doctor in the know or do some research on ye olde internet. My understanding is that as an auto-immune disease AU only affects hair and sometimes nails. Let me know if you learn different.

3) There is no connection between AU and psychological issues. It’s a genetic auto-immune condition and has nothing to do with psychological issues. That said, it can certainly impact your self-image and affect people’s mood and outlook just as other diseases that affect your physical self may also affect your outlook.

Hope this helps. Hang in there!

Daniel

:-)

Daniel, thanks very much for your answers!

My third question sounded maybe a little bit bumbling, but I had lately a discussion about that with my dermatologist. She thinks there must be a trigger for AA. I told her, that all people in war need to have AA, if it’s a disease you get only in big distress. She meant no, but asked me, why she sees so many immigrants with AA…

Anyway, I’ve another question, if you don’t mind.
- I plan a project in Africa for the next year. I’ll stay there for several months. It’s not a sandy, but quiet dusty area in Ethiopia. Do you have any experiences coping with beeing without eyelashes and nose-hair, is it unpleasant to live in such areas. I mean, do you feel much more sensitive with your eyes and nose or shouldn’t that be a problem?

In the meantime, merry Christmas and Cheers from overseas.
Sandi

no eyelashes, eyebrows or nose hair

Hey Sandi:

The only things I notice with no eyelashes is that dust gets into my eyes easier. It doesn’t stop me from doing anything I did when I had hair – but consider taking sunglasses or just plain glasses with clear lenses (I’m assuming you don’t require corrective lenses). I need glasses to see and they conveniently serve the following purposes:

  • keep more dust out of my eyes
  • act as a visual set of eyebrows—People don’t notice as easily that I don’t have eyebrows and they help frame an otherwise blank canvas/face

As for eyebrows, I’ve noticed that when I work out or sweat a lot the sweat rolls from the head to the eye easily without the benefit of eyebrows. Eyebrows are a great way for you body to keep sweat from rolling into your eyes. Again, though, it’s never stopped me from doing anything. When I run I’ll wear a hat or sweatband to keep the sweat out.

Without nose hair I’ve noticed that in dusty situations I get more crud in my nose. So I just blow my nose more often and clean it out more often than I did with nose hair. That said, it’s a very minor detail.

The overall theme is I’d go anywhere on the planet as a baldy and do anything and barely notice a difference. Consider glasses or sunglasses and a sweatband or hat and I think you’ll be golden. Have fun!

Daniel

Are We Twinns ?

I have Alopecia or UA and I look just like you high speed but i have a hot GF and a good attitude to boot. I am currently preparing to deploy to Iraq. I think that it is cool that you put a website together for us special people. Keep your head up and I will post a pic to prove what I’m saying


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