Have you ever done the math on money you’re saving by not buying razors?

Honestly, no! I should have started doing that though!

It is a lot. At my 20 year mark in the Army, I casually calculated I had spent about 10k on shitty haircuts.

Good disposable blades, like $1 a blade. Lasts a week. Not sure blade use for girls.

Anyway you have easily saved enough to buy a new Toyota Yaris.

Anyway you have easily saved enough to buy a new Toyota Yaris.

ha! I like your mindset

So where’s your Toyota Yaris?

I’m almost done paying off my civic. I’ll have that shit until it dies 😂😂😂

Does it affect your nosehair? If so, how does it affect you?

Yes surprisingly not having nose hair has proven to be difficult especially in the winter months. I'm an EMT so if I have a cold and I bend over a patient...the boogers just kinda come out? It's mortifying but I do my best to just constantly inhale when leaning over them. I have never had allergies so no changes there.

That sounds like the worst part honestly. Like think about you. You probably are a better swimmer than most. But does that undo the falling boogers? Idk

Yah, I'm not gunna lie it can be pretty embarrassing. Although I'll take booger shots ALL DAY over an eyelash falling off midway through a date. (it happened, it was mortifying)

If it makes you feel any less mortified now, eyelashes are constantly shedding, anyway!

.... oh wait, I just realized you may mean you had strip lashes fall off on a date... Now I'm reminded of that video of the girl removing her lashes after prom in front of her horrified date.

Yah fake eyelashes :((((

I'm an EMT too!! Wooo!

Don't you mean ambulance driver ;)

TYFYS

I love my job! Thank you!

Do you ever feel self conscious about your condition?

Of course, but I'm kinda at the point where I forget I have it! Initially it was a massive shock and adjustment.

Do you hear a lot of Arrested Development jokes since one of the characters has this condition?

I do, I should really watch the show so I understand the reference fully lol

Are there any other effects from alopecia aside from the full hair loss?

Nope!! Thankfully.

I have a friend with Alopecia, she rocks it with great confidence. She's somewhat of a celebrity in the City we live in, in that she'll have total strangers approach her when traveling and say "You live in ____, right? I see you all the time." We met Jessica Alba through a mutual friend who worked on the set of something she was filming and Jessica said "I've definitely seen you around."

She also gets cat-calls "YO, You got a beautiful head my dear!" being one example I remember.

Oh that's amazing!! I work in a city as an EMT and I've had a bunch of people recognize me from calls which is always so nice <3

As someone plagued with horrible ingrown hairs that become cystic and look like golfball's under my skin, yall got anymore of that alopecia to go around?

Ok, so I definitely get these once or twice a year and they are so painful. I sympathize with you!!

Wait, what? You get ingrown hairs? So your body still grows hair, but it falls off? Im so confused right now!

Yah sometimes I get 1 or 2 sporadic hairs that grow and again sometimes they form ingrown hairs. It’s bizarre.

Does your condition cause cilia loss too?

Good question! Yes initially, I had no hair. Most recently I've just started growing these types of hair back. Haven't noticed much of a difference other than I can sometimes feel them blow in the wind

I'm confused. Aren't cilia the hair-looking extenders outside cells, or inside lungs?

Yes they are. Cilia is the latin word for eyelashes, and in some languages the modern word is derived from it ("cil" is french for "eyelash"). If OP is not from an English-speaking country, that could explain it. Otherwise, I'm just as confused as you are regarding the fact that one can feel the cilia inside of their lungs blowing in the wind.

Perhaps she is mistaking cilia for vellus hair?

Yes I was thinking about that type of hair , like peach fuzz almost. But even in my ears I’ve had my PCP ask if I’ve had hearing loss because there’s no hair left.

Are you a faster swimmer now?

I've never been a huge swimmer to make this determination!

First of all, thank you for doing this AMA, very interesting!

So if I am not mistaken there are hairs inside of the ears to help us hear, right? Are those also affected by your condition and if so, do you experience trouble hearing?

I don’t know if it’s adulthood and more people are mumbling, but I’ve found it’s SLIGHTLY harder to hear but nothing drastic. I also work on in ambulance..in a city. So I hear a lot of different noises at once.

How long did it take you to get used to it?

Uhm, I want to say these past few months actually I've just started to be like OK I HAVE THIS & it's time to really embrace who I am now!

I was in a new relationship just as all of this started, so during my acceptance process I always struggled with "He only loves me because he feels bad," or "I"ll never find someone to love me bald." I've started dating again (we just broke up) and my whole fear has proven to be false.

as a guy i have to admit i dig the look a lot, it's like dating a cute version of the rock :D

Thank you!

Have you come up with any cool Halloween costume ideas to go with the hairless look? Like Neo right out of the Matrix pod or a female Professor X?

Ha, just Sinead O'Connor. Not many my age understood the reference.

You would be an awesome Ancient One from Doctor Strange!

I would love to get into acting or modeling with the alopecia!!

Anthony Carrigan is the fucking shit.

I would love to meet him!

So does this mean you don't have to shave your legs or private regions? That could save you hours of otherwise wasted time.

I literally have no hair!

My sister in law has Alopecia! She's pretty comfortable with it but on more than one occasion I've heard someone ask her, directly, of she has cancer. Does that happen to you as well? Does it annoy you?

Also a second question - have you ever said Yes to the above and if so why?

I’m asked at least weekly and I’ve never said yes. I don’t need that karma. Sometimes I’ll just listen to what people have to say because usually when someone is asking me if I have cancer it’s because they want to tell me about their or a friends struggle.

Can it happen at any age and/or at any time in your life? Or does it generally occur in your 20’s, 30’s, etc?

I ask because the only people I have known to have alopecia are in that age bracket; however my assumption is that maybe the older generation may be more self conscious/embarrassed about it? (and wear wigs more often?)...As opposed to maybe the younger generation being more “free” about it?...or maybe it’s just completely coincidence.

Also - does alopecia happen to men too? I’ve never seen a male with alopecia but again maybe it’s because I assume - oh maybe that person is bald/shaved by choice.

Thank you!

Edit** Shame on insurance companies minimizing an illness/disease (please forgive my lack of the correct term) simply because at first glance it appears to be “all external” and not “internal”. Emotional and mental health is just as important as physical health.

2nd edit** I have no idea on whether there are adverse physical / biological (internal?) effects from alopecia. My ignorant knowledge of alopecia would lead me to believe its (mostly) external, but not dangerous to your physical health.

It can happen at any age & to either gender. It's most commonly diagnosed in childhood. I think the psychological adjustments are difficult at any age, but you're right in adulthood I'm too busy with keeping up with daily life to care if I have haor.

It does happen to men! Anthony Carrigan & Charlie Villanueva are some notable examples.

Also Matt Lucas, who is terrific in Little Britain. He has said he is a makeup artist’s dream because of this condition.

Haven't heard of him, i'm going to look him up now!

JUST KIDDING. I saw him in bridesmaids!!

Josh Dobbs has this. He was the quarterback at tennessee in college and I think is with the Steelers now. If I remember right he did some charity type stuff with kids during his college career to show them that it's doesn't have to keep you from living your dreams.

That's one of my sole purposes for doing volunteer work centered around alopecia. Does it suck? yes it can. Should it stop you from living your life? Absolutely not. It could always be worse.

When you were diagnosed how did you initially feel? What helped you cope the most?

I remember waking into the dermatologists office when I was 20 and taking out my hair elastic and a clump of hair came out with it. I looked at the dermatologist and i'm like " this is whats happening..." She did a biopsy and told me "this is very likely alopecia and there's nothing we can do or say to promise you won't lose all of your hair"

I had gone to these appointments alone as the primary focus at the time was my mothers condition. The key word that pops into my head for that time period is "helpless." I really didn't know what to do, who to turn to.

I found the most relief when it all finally fell out. I actually started doing crossfit to combat the stress of everything and I've stuck with it since. It's helped IMMENSELY .

How do you deal with the sweat head? Headband? Also the sweat running into your eyes because no eyebrows?

Yah it’s difficult. I usually just use my t shirt to wipe it

As a bald and fairly sweaty man, I keep a bandana or handkercheif in my back pocket and just do an occasional head wipe when it's warm and I start to sweat. Way better than a t-shirt. Especially if you wear makeup, you probably don't want sweaty make up streaks on your shirt.

I actually don’t sweat too much on my scalp unless I’m working out & in that case I’m not wearing makeup anyway! But thanks for the tip!

What are the odds that the hair comes back? How common is that? I ask because my aunt has Alopecia and she lost all her hair for the first time when she was in college. A while later (I'm not sure how long, but I think a few years), it all grew back!! She had hair again for years and recently the Alopecia 'came back' and she lost her hair again. She now rocks some cool head scarves!

If you’re diagnosed in adulthood there’s a higher chance of it coming back. I don’t know the statistics, but I do know I used to obsess over the thoughts of it coming back. I’ve resorted to the mind set that it won’t and I’m ok with it

A bit of a weird question, but a honest one. With no bum hair, has going to the bathroom or the sound of your farts changed?

...I pull less hair out of my butt after the shower but no tone difference in the flatulence department.

Since you developed the condition, has it affected your mental health at all? i.e when you look in the mirror and seeing how you look different. (I have a long term sickness and it has effected my own mental health, just wondered the differences) Has it affected your confidence with men?

Up until recently it most certainly affected my confidence with men...but there’s been something about the last few months where I’ve just been like “I am confident. I will own this. I will go talk to that guy” now it has lead to some rejection, but I’d face that hair or not.

As far as the mirror goes, yes I find it’s still an adjustment looking in the mirror when I am completely makeup free.

Have you considered tattooing eyebrows? I think you are perfectly fine as you are - but I have heard some people do that.

I have. I don’t like commitment. Especially on my face 🙀

Imagine if they ended up crooked. You would look puzzled for the rest of your life :-)

My worst nightmare! That happens now sometimes and I have to fix it lol

What are the statistics behind it/how many people get this condition? And what other ways do you try to spread awareness?

I wanna say it’s 2% of the population is at risk! I volunteer at local events and share my story whenever asked!

Do you feel like the stress of losing your mother (I'm sorry for that) triggered your Alopecia? Is it permanent?

Did it take long to get used to the feeling/sensation of no hair?

Do you feel like the stress of losing your mother (I'm sorry for that) triggered your Alopecia? Is it permanent?

I don't know to be honest. The doctors obviously view it as an easy out diagnostically...op, most stressful event in her life triggered the alopecia. GREAT DONE NEXT. But, I'm not stressed anymore, in fact I live a really healthy life physically and dietary wise and I've had absolutely no regrowth. I've done some research on gut health & autoimmune disease and I think more research in that direction would be promising.

& yes it took a bit. I remember the first night I slept bald it was like mid winter in Boston and my first thought laying down and putting my head on the pillow was "welp...i'm very cold right now." Taking a shower was weird initially too, but now it's so quick & easy.

I also believe that all autoimmune diseases are preset into our genes and are generally woken up at some point in our life due to external environmental factors such as stress...

That’s the theory I believe too

When I had hair loss due to chemo strangers were much nicer to me. Holding doors, offering to carry stuff, etc. Women especially gave me that knowing look....cancer kinship. Have you found that people think you have cancer and treat you differently?

Even those who know I have alopecia treat me differently. I’ve found that it’s made me much more hesitant to take handouts or anything. I can’t tel you how many times be barista at Starbucks hasn’t charged me and given me a sympathetic smile.

When you go to McDonald's, what is your go-to order?

Small fry small coke. Just enough to indulge and not feel like an asshole after.

Because you’ve lost your eyelashes and eyebrows, have you considered (or do you) put fake eyelashes on when going out and draw your eyebrows on? Would you get cosmetic tattoos like eyebrow tattoos and eyeliner tattoos? Do you feel strange about the lack of definition in those areas?

Yes. I put on fake lashes daily and draw on my eyebrows. I am still trying to become comfortable with what I look like without them, especially midway through the winter when I’m as pale as a ghost. I don’t think I could commit to the tattoo brows.

Shaved or waxed ? Nope alopeciad

truth

I can think of many pros to not having body hair (especially for a woman) but what are the cons? Do you get stuff in your eyes frequently? Do you sneeze more?

SWEAT IN THE EYES. it hurts much more than you’d think!!! I’m still not used to that. I do get stuff in my eyes but I don’t think it’s any more so than with hair

You know the sensation of hairs standing up on the back of your neck or arms etc, do you still get that sensation without hair?

Uhhhhhh I don’t know? Good question.

thats just goosebumps, do you get goosebumps? like when you're cold or someone brushes you with a feather.

Oh yah! I love getting goosebumps 🤤

Have you looked at the Coimbra protocol? There are many testimonies of people that were treated successfully and had their hair grown back.

https://www.coimbraprotocol.com/single-post/2019/06/19/Ana-Paula---Alopecia-Areata

The protocol works well with most autoimmune diseases and I understand that alopecia is another of these conditions where our body fights the wrong enemy. I am also on it since 4 years.

I’ll look into it. Thank you!

One of the hosts of a podcast I listen to has alopecia. He started losing his hair in high school (had the crowd from an opposing soccer team heckling him on the field because he was going bald. D:) but he's in his mid-40s and has more than embraced it now.

You are absolutely ROCKIN' the look, and I'm glad you've been able to embrace it as well, even if it's been only recently.

My question is, and it sounds a bit silly, but do you still have to shampoo your head to stave off dandruff?

That’s awesome to hear!! No shampoo usually just incorporate the body wash to the scalp!

I have a friend who has alopecia on both of her armpits so she's never had to shave them, whereas her sister only has alopecia in one of her armpits.

In their case is it areata because it's "patchy"? Or are they an anomaly?

That’s the most common form; Alopecia AREATA.

What is your favorite color please?

Light green.

Once you started losing hair how long did it take to lose all your body hair?

Start to last eyelash blowing off was about a year

Did you pour a little thimble out for your last fallen homie?

Hahaha! I remember telling my dad “hey I have one eye-...just kidding it’s gone”

Have you seen https://www.cominguprosies.com ? She's the sweetest girl and raises money for art supplies and such for "kids who look like her"

I MET HER LAST YEAR!! She is wicked cute!!! So confident too!

Are you... from the future?

Yes. Things just get worse. Abort now.

Do you wear wigs?

Do you do anything for eyebrows/eyelashes?

Do you find dating/relationships to be harder than before hairloss?

I don’t wear wigs & I wear false eyelashes daily. I do find dating hard but I’m at that point where I’m not forcing anything. Someone will end up loving me for me!

Do you ever wear wild wigs? Like not some boring "can i speak to your manager" haircut wig, a blacklight reactive one styled in a giant mohawk or something equally out there

Omg Halloween 2019. It’s happening.

Now that you're used to this and have seen both sides, is it better to have hair or not have it?

As a guy who doesn't care about how I look; only eyebrows, lashes and nose hair seem to have practical use so I might actually prefer losing it all.

Feasibility wise, probably having hair. I work a lot and a lot of unecessarytime is spent just putting on lashes/eyebrows in the morning so I look normal. Before I could just get up and go.

Huh. I guess I was thinking it'd be the opposite, no hair styling, no shaving, just get up and go. Hadn't thought about gluing on eyebrows.

The eyebrows are powder and the lashes glue. It’s really not that bad, but I miss just showering and leaving

Hey actually curious and mean no offence... do you struggle with the dating scene? I think your beautiful (obviously). Do you wear wigs? if so how do most men react when you tell them you have alopecia?

I don’t wear wigs!! I think the dating scene is tough for our generation in general but yes I would say this puts a bit of a hindrance on it

It is depressing to not have hair? If so how do you deal with it

Of course it can be! But honestly. WHO CARES. I’m still able to live my life the same way whereas a lot of people aren’t afforded that ability.

Sometimes do you just find yourself saying Alopecia just because it rolls off the tongue so beautifully?

ha! you know what, now that I'm confident in having it I do find myself saying "i have alopeciA!" with a little flexion at the end

So, you're from the midwest?

Nope, Boston!

I didn't know "op/ope" spread that far east.

I don't understand?

You said "op" as part of another comment. It's a very very common verbal thing in the midwest. Like, "Ope, didn't see you there".

op! didn't know that!

Any thoughts on elimination dieting?

I have tried so many times. It’s my own fault I can’t stick to it but I e heard people have success

I dated a girl with alopecia. Lets just say there were some darn nice things that comes with no hair down there :P Also yay for no clogged drains! It's true she had some self esteem problems, but I was a nurse and have been around people with the condition many times. Took her some time to be comfortable, but once I showed her my pot belly(I can make my belly huge if I "relax"), she got over it fast and laughed for the whole day...my manhood XD So the question is, have you found someone to make you comfortable with your condition and makes you laugh? Also I'm sure you could create a foundation for wig charity for adults with alopecia when you go to the conference, or at least find an existing one.

have you found someone to make you comfortable with your condition and makes you laugh?

I've found several people, but it never seems like they ever want to take the next step. I don't know if it's a them or me problem, but I'm kind of at the point where I'm ok being alone. I've started traveling a bunch and doing things I enjoy!