I like to do one of these about once a year to raise some general awareness for Alopecia!!

I’ve had Alopecia Universalis for about 5 years now. I rapidly started losing all of my body hair when my mother died at 52 from COPD/CHF. There are 3 categories of Alopecia; areata (patchy hair loss), totalis (hair loss above the neck) and Universalis (total body hair loss)

Currently there is no known cause or cure for Alopecia. Many insurance companies will not covers wigs for those with Alopecia and only cover them for patients with cancer or leukemia. I'm actually traveling to Seattle next week for the annual conference!!

My Proof: https://imgur.com/gallery/rlwJheD & https://imgur.com/gallery/r6U9XZG (these are from within the past few weeks)

This is my before picture from 2014: https://imgur.com/gallery/NpDdx

& this was during the hair loss process:https://imgur.com/a/R68E83N . (sorry for the poor quality, it refuses to download from my icloud)

I love answering questions about it and find that doing these help me when I educate students or even adults in public on what Alopecia is!

Ask away 😊

EDIT: alopecia universalis results in total body hair loss. So yes. Everything matches. I have a great decorator.

EDIT: WOW almost 24 hours later and I can’t keep Up with all of the comments!! I’m so so happy that I was able to spread some awareness! 😊

Comments: 1024 • Responses: 69  • Date: 

stvhght2164 karma

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

alopeciatakesover1437 karma

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

LastOneSergeant834 karma

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.

alopeciatakesover636 karma

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

ha! I like your mindset

SLuMPz31 karma

So where’s your Toyota Yaris?

alopeciatakesover86 karma

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

Daskesmoelf_8923 karma

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

alopeciatakesover2208 karma

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.

mybustersword157 karma

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

alopeciatakesover269 karma

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)

eareitak90 karma

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.

alopeciatakesover89 karma

Yah fake eyelashes :((((

CoolAsAPrius36 karma

I'm an EMT too!! Wooo!

alopeciatakesover109 karma

Don't you mean ambulance driver ;)

benzodiazaqueen46 karma

TYFYS

alopeciatakesover43 karma

I love my job! Thank you!

GenericBayAreaAsian640 karma

Do you ever feel self conscious about your condition?

alopeciatakesover835 karma

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

bunchofclowns597 karma

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

alopeciatakesover579 karma

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

Patrickme532 karma

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

alopeciatakesover492 karma

Nope!! Thankfully.

MesWantooth447 karma

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.

alopeciatakesover293 karma

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

juicepoofs297 karma

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?

alopeciatakesover209 karma

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

LitigiousWhelk157 karma

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

alopeciatakesover286 karma

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

nnkkmmuu237 karma

Does your condition cause cilia loss too?

alopeciatakesover286 karma

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

stink3rbelle114 karma

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

Drokath92 karma

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.

HeathenForAllSeasons41 karma

Perhaps she is mistaking cilia for vellus hair?

alopeciatakesover46 karma

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.

alatar214782203 karma

Are you a faster swimmer now?

alopeciatakesover168 karma

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

10lbsjunebug155 karma

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?

alopeciatakesover165 karma

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.

i-invented-sex-69122 karma

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

alopeciatakesover331 karma

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.

Xmeagol225 karma

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

alopeciatakesover96 karma

Thank you!

noshore4me117 karma

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?

alopeciatakesover233 karma

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

Moonbrush73 karma

You would be an awesome Ancient One from Doctor Strange!

alopeciatakesover49 karma

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

Parictis19 karma

Anthony Carrigan is the fucking shit.

alopeciatakesover14 karma

I would love to meet him!

bertiebees114 karma

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

alopeciatakesover265 karma

I literally have no hair!

jetteh2287 karma

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?

alopeciatakesover302 karma

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.

Cementboardable84 karma

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.

alopeciatakesover110 karma

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.

Ra2ltsa57 karma

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

alopeciatakesover31 karma

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

alopeciatakesover54 karma

JUST KIDDING. I saw him in bridesmaids!!

teh_jolly_giant30 karma

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.

alopeciatakesover32 karma

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.

StarFiiji77 karma

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

alopeciatakesover250 karma

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 .

SnatchAddict45 karma

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

alopeciatakesover47 karma

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

OliverChest36 karma

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.

alopeciatakesover32 karma

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!

pm_cute_bunny_pics74 karma

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!

alopeciatakesover122 karma

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

MegaPendoo54 karma

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?

alopeciatakesover117 karma

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

MegaPendoo20 karma

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?

alopeciatakesover37 karma

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.

quotes-unnecessary51 karma

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

alopeciatakesover124 karma

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

Throw53258561 karma

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

alopeciatakesover52 karma

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

suckmyclitbish41 karma

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

alopeciatakesover37 karma

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

neildmaster39 karma

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?

alopeciatakesover73 karma

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.

makafre31 karma

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...

alopeciatakesover13 karma

That’s the theory I believe too

VegHeaded37 karma

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?

alopeciatakesover54 karma

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.

Ballthax1335 karma

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

alopeciatakesover85 karma

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

LilMiss9929 karma

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?

alopeciatakesover57 karma

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.

cliffomalley28 karma

Shaved or waxed ? Nope alopeciad

alopeciatakesover24 karma

truth

edibleBarOfSoap25 karma

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?

alopeciatakesover51 karma

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

iFlipRizla25 karma

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?

alopeciatakesover23 karma

Uhhhhhh I don’t know? Good question.

wadss16 karma

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

alopeciatakesover15 karma

Oh yah! I love getting goosebumps 🤤

makafre24 karma

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.

alopeciatakesover14 karma

I’ll look into it. Thank you!

Racxie22 karma

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?

alopeciatakesover19 karma

That’s the most common form; Alopecia AREATA.

bigangry22 karma

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?

alopeciatakesover19 karma

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

cfcnotbummer21 karma

What is your favorite color please?

alopeciatakesover30 karma

Light green.

StarFiiji20 karma

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

alopeciatakesover37 karma

Start to last eyelash blowing off was about a year

OliverChest31 karma

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

alopeciatakesover43 karma

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

dcostalis19 karma

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"

alopeciatakesover27 karma

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

jack-o-licious18 karma

Are you... from the future?

alopeciatakesover50 karma

Yes. Things just get worse. Abort now.

the_slate17 karma

Do you wear wigs?

Do you do anything for eyebrows/eyelashes?

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

alopeciatakesover58 karma

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!

I_Rain_On_Parades17 karma

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

alopeciatakesover23 karma

Omg Halloween 2019. It’s happening.

Fyqpop12 karma

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.

alopeciatakesover19 karma

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.

ElJamoquio8 karma

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.

alopeciatakesover15 karma

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

Missdriver199710 karma

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?

alopeciatakesover12 karma

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

sonygoup9 karma

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

alopeciatakesover28 karma

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.

justscottaustin2 karma

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

alopeciatakesover3 karma

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

Upeeru1 karma

So, you're from the midwest?

alopeciatakesover1 karma

Nope, Boston!

Upeeru-2 karma

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

alopeciatakesover2 karma

I don't understand?

Upeeru-1 karma

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".

alopeciatakesover2 karma

op! didn't know that!

danamirmina1 karma

Any thoughts on elimination dieting?

alopeciatakesover2 karma

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

Taurius-10 karma

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.

alopeciatakesover10 karma

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!