IamA 22/F with Alopecia Universalis AMA!

Is hair loss the only issue with the disease? What other health issues are involved?

On paper, yes. Hair loss is the only issue. I think there's much more involved. I have never EVER in my life had acne. As soon as this all began, I have persistent painful acne. Primarily on my forehead between the brows, and to the right/left of my bottom lip, near my chin. It's very frustrating, and I can't help but think it's related.

I'm also very fatigued, but again I don't know if that's a lifestyle problem or autoimmune related. It started around the same time this all began.

Hairs are connected to pores, blocked pores result in pimples. Hair acts as a vessel for the skins sebum and other bodily debris to exit the skin. So I would say you are correct in thinking the hair loss and increase in acne is related.

It's so so painful.

Not OP but also have alopecia: without eyelashes your eyes are much less protected from dust etc so more easily irritated. Same with nostrils.

YEAP! When sweat gets into my eyes it is so painful.

Do you get people assuming you have cancer a lot?

Yes, and at first I remember being so annoyed by it. Now, I look at it as they're trying to relate with me about it because they have cancer or know someone who does.

I had the following conversation with a customer at work the other day...

"Alright well have a good day..." me

"Thanks, you'll get through it..." customer

• me thinking that she's talking about how busy it was* "oh yeah it's always busy, makes the day go by"-me

"Oh, no i'm an oncology nurse at the nearby hospital, you'll get through it."- customer

"i don't have cancer, i have alopecia, do you know what that is."-me

"oh God, yes...shoot me now. Have a good day."-customer

makes me chuckle lol

You should pull an Arrested Development on them.

"Oh.. shit, you think I have cancer.. Hang on, let me put on my ashamed eyebrows.............. No, sorry, I have alopecia."

If you've never seen the show, one of the characters has it and it's kind of a running joke.

no i haven't seen it!! I had no idea..

Aside from the difficulties, are there any upsides to not having hair anymore?

Well, yes. I honestly only have to take a shower in the morning, draw on my eyebrows (which can get annoying), and then I'm done. Before, it would take me almost an hour to get ready.

I bet you save a ton of money on shampoo, hair spray, and combs.

YAS. To make myself feel better I started doing crossfit with the money i'm "saving," or that I convinced myself I'm saving lol. I didn't want to be fat and bald :p

Bald is one thing. Being fat is a whole other level. Source: i am fat

I used to be almost 300 pounds...I'm now about 160...I would never ever go back.

FWIW, I think you are super cute. I'd date you.

Thank you! The most important lesson I've learned throughout this journey is that hair doesn't define me...sounds corny but it's true. Having confidence, a great personality, and just being a good human being far outweigh having hair.

I can't believe it's been over ten hours and the hivemind hasn't busted your balls for doing crossfit.

You look great, OP.

HA! Yes, I love crossfit...I am no pro whatsoever...but I never leave there feeling like I didn't work my ass off.

Do you ever draw on your eyebrows in the morning shaped to fit a certain mood, then regret it later in the day when your mood changes?

absolutely not. I'm already uncomfortable enough with the thought of having to do it lol, I'm not looking to make matters worse.

It's been asked elsewhere, is the absence of hair everywhere? and someone responded that it's universalis.

However, the few pics I've come across of people with alopecia, I think they've all appeared to have eyelashes.
So I'm going to ask, because it's an AMA, is it everywhere? And does this include stupid stuff like nose hair too?
(If I can't ask this in an AMA, where can I ask it?)
I imagine a lack of eyebrows is annoying when a person is working up a sweat, and similarly, eyelashes and nose hair serve a purpose more so than most body hair.

Also, I'm curious how this affects dating and such. On the one hand, there are people who pay for hair removal (in painful ways), and on the other hand, some people may feel a bald head is too much. How do most potential partners seem to take it?
One thing reddit has taught me is that pretty much anything can be (and probably is) fetishized. Any experiences/observations with guys interested in you for those types of reasons?

I'm not OP obviously but I also have Alopecia Universalis and yes, everywhere. No eyelashes or eyebrows which is a constant pain, you don't realize how much they do until they're gone. And I don't mean thin or with some peach fuzz that you would still have if you overplucked or something. Zero hair. Nose hair also became a problem for me as in winter it is so dry, and nose hair helps hold some moisture but when I didn't have any, I had to use a nose lubricant so it would stop cracking and bleeding. All sorts of little things you don't realize hair does! Even my earwax changed texture from having no little hairs. So weird.

The ear hair was the biggest "holy shit year okay that's gone now" loss. WIND IS SO COLD....and it feels super weird. Also the eyelashes, your really don't realize how awesome those are at catching sweat. That shit hurts.

Would using false lashes help? Obviously there's no need to use the more dramatic ones if you don't to, but if the goal is to help keep dust and sweat from irritating the eyes, I'm wondering if falsies might help?

I just started looking into this. I'm nervous about it, because I don't have any lashes to glue them on to. Any advice?

Ok...sharing advice on falsies is something I never expected to do on Reddit but here we are :) I use Maybelline's Lash Factory Powerglue and it seems to work well for me*. There are some stronger glues out there though. The trick with most lash glues is you have to let them sit on the falsie for about half a minute or a minute before putting them on (you're basically waiting for the glue to solidify a bit so it can provide a much better grip). Once you put them on, hold them in place for another half a minute so it'll stay put.

*Bear in mind I have lashes so I might be giving you pretty irrelevant advice here. At any rate, I wish you all the best!

Thank you. I will try this soon!

So I googled your disease out of curiosity.. wikpedia mentioned a case where someone was able to regrow their hair by taking tofacitinib citrate .. have you ever explored that at all?

Yes I've looked into it. It's also called xeljanz. It's an immunosuppressant most commonly used for the treatment pf a form of arthritis. It's dangerous taking medications like that. You can get very sick. That was part of my reason for posting this, I wanted to see if anyone with alopecia or without alopecia had tried using this medication

Yeah, I actually have experience working with this drug for this purpose. It was based off of a "study" done a few years back on one guy diagnosed with the same condition as you. I was tasked with formulating a topical version for several patients for a doc in NYC, I think. It was a several projects ago, sorry for the vagueness. What I do recall it it was ridiculously expensive, and had questionable stability.

It's ridiculously expensive. $2,000 a month...da fuq?

I just looked into the wholesaler and the price is about $3,600 . That will get you a quantity of 60, 5 mg tablets. I think da fuq? is an appropriate response. I don't know how many people you'll hear from that have tried it, the cost is really prohibitive. Pfizer makes the drug, and I'm almost positive they offer a coupon discount because a lot of insurances don't cover it, especially for off-label uses like alopecia universalis.

Yes they do. It's only a 3 month coupon though, so after the 3 months you're a. Shit out of luck if your insurance doesn't cover it and b. At a complete standstill/loss because unless you keep up with these drugs, the symptoms will come back and there goes the hair.

I'm comfortable with this now. If I were to grow hair and then all of the sudden have to go through the loss again, I would be pretty upset.

As a man who started going bald at age 18, it took me a decade before I finally could cope and not be angry and upset at how it made me. Whenever I was feeling upset, I would realize that I can at least shave my head and look alright. I would think about women who have this problem and realize how much worse it must be to be balding as a woman. Knowing how I've felt about it, I'm sure this has made you upset on more than one occasion.

Have you managed to get over the feelings of depression because of this condition? Do you have bad days when it gets you down?

Also, I saw that you posted about drawing eyebrows, have you ever thought of getting them tattooed on? A lot of people are doing that now.

Exercising has really helped me cope. It helps remind myself that I'm still only 22, I'm healthy, I can run and do all these things that many people who are ill cannot.

Did you listen to Alopecia full album from Why? It talks about the disease in every song.

I haven't i'll take a look now

Pardon my asking but is it just head hair? Or is it everywhere?

Universalis

It's everywhere

lol, thank you. Yes it's everywhere. EXCEPT the tops on my fingers. I have hair there.

Do you feel like this has impacted your romantic life very severely?

Not really. I have a pretty fantastic boyfriend!

You look amazing BTW! I know this must've been absolutely devastating, especially dealing with this after your Mom's death. I'm really sorry that you had to go through all of that and I'm also sorry about your Mom. How have you been able to cope with all of this? What would you say to another female going through hair loss? Do you ever wear wigs or do you just rock your gorgeous, bald head?

Thanks!! I used to wear a wig, I don't anymore. Way too uncomfortable for me... Coping has been difficult, but exercise and talking things out are my 2 techniques.

Do you think that the emotional impact and/or stress related to the loss of your mother could possibly have some connection with your alopecia?

I don't know...All the doctors seem to think so, but it doesn't make sense. I think her death may have initiated the immune response, but what about now? Now, I'm better. I'm less stressed, I exercise, I eat well, I treat myself when needed. I'm fine, but where's the hair?

Personally, I'm going to hop on the "gluten is bad" train. Seriously if you look into that shit and how bad it is for you, you're going to be horrified. Many, if not all, autoimmune diseases are related to inflammation in the gut. Many people, unknowingly, can't tolerate the intake of gluten/dairy/legumes/etc. so they keep eating it, gut becomes inflamed, and viola autoimmune disease.

Ugh, I sound crazy.

I've known two people with the same type of alopecia as you, they both developed it after a period of extreme stress (a bereavement, and the other after her husband abandoned her, leaving her penniless with a small child). Eventually their hair did grow back, although it was 4-5 years later, and it did grow back differently (thinner, more fine, more prone to breakage and doesn't grow as fast as normal, so they both have short hairstyles)

I developed a type of inflammatory/autoimmune arthritis after a period of emotional stress as well, but that has never gone away, although it has a pattern of flaring up with periods where it doesn't cause much pain. Autoimmune conditions are quite weird really. Some people with my arthritis swear by no gluten/no starch diets but it didn't work for me

It's insane that it's 2015, almost 2016, and there's really not much to show as to why people have autoimmune disease.

Hello. 24/M here.

My hair started falling out in April. Right now, I have a bald spot the size of the bottom of a Coke can. It doesn't seem to have stopped yet.

So, I was wondering, how long until the rest of it fell out? And how did it continue? Was it just random spots that started growing or hair falling out from wherever?

So far, they're only calling mine Alopecia Areata, but I'm not convinced it's stopping anytime soon. I was curious what I had to look forward to lol.

I would say that from the moment I found my first spot, to the day I lost my last eyelash, it was approximately a year. Head hair was all gone within 4-6 months. That really sucked.

If I could have alopecia on everywhere but my head, eyelashes, eye brows, I'd be happy as hell! That would be saweet

Yeah I wish his was one of those pick and choose things, but it isn't. Otherwise the only place I'd have hair would not be the tops of my fingers...

I rub the hair on my lips sometimes just to remind myself of what hair feels like on my body...is that weird?

It'd be weird only if you didnt have alopecia!

Do you ever feel weird being hairless/smooth down there all the time? lol or do you prefer it

Loved it before, love it even more after because it doesn't cost me anything...

Your last name wouldn't be Sitwell would it?

Nope, is that a fellow alopecian?!

Have you considered getting your eyebrows tattooed on?

No, I haven't. I can't stand the idea of having something on my face that I can change or remove, especially something voluntary. Plus, the hair can spontaneously grow back...

Do you wear a wig? My mother has alopecia and wears a wig.

No, my insurance company won't cover it because I don't have cancer!

This doesn't make any sense to me. Hair loss can be caused from all sorts of things- I don't think the nature of the hair loss should determine whether or not the cost of a wig is covered.

Believe me. I know. It's foolish. The one and only side effect of alopecia is hair loss.........

I have alopecia myself, i will admit mine is currently not as severe as yours but it still sucks. My beard is what is affected, i went from bearded to spotted over night. I currently go for injections in my chin and neck to fight it off. It worked the first time then came back after treatment was done. Hair is "starting" to come back again.. what treatment do you take?

I started with the injections but the alopecia quickly got worse and the injections stopped working.

I also have alopecia and wonder if others do this too...do you often look at other people and think "wow, hair is really weird. Like, why do we still have it?"

I often look at people who are putting their hair up and I think about how much I miss it. D:

I have very long hair and have been looking into shaving it off and donating it all to have it made into a wig for the benefit of someone with alopecia. Do you know of any credible organisations I should contact? Any thoughts on the matter?

Actually, I don't.

Many of those organizations strictly help women with cancer. I just changed my insurance company, and they told me they won't cover a wig unless I have cancer, alopecia doesn't count.

What do you do when you meet other people with it? I'm asking because I have the same thing! And I see some people in my campus with it but I never know what to do... I always have the urge to say "hello brother" but I feel like that'd be weird.... Anyways, hello sister!

Ive only been in this instance once before, and it was a child with spots and he was with his mother. I didn't have my hat on, and I said "excuse me, does your son have alopecia? I have it too!" She responded with "yes! I saw you walking around but I assumed you had cancer."

In my head I was just like mmmmwut?¡¿!

Do you speak any other languages besides English?

American Sign Language!

How did you learn? Are you also deaf?

Nope. Just took it in college

What are the challenges you face every day? As a fellow Hairless Bi-pedal, I am constantly facing issues of the cold on my skin. I often have to dress warm even indoors to compensate for lack of insulation.

When I moved from the remote woods of northern Ontario down into the city, nobody told me how cold it would get in the winter. I find that wool helps a lot, what about you?

Beanies in the winter are my new best friend!

My neighbour has this. What treatments have you found to be the most effective and what ones have been the most frightening?

Really, there aren't any effective treatments.

They can do little steroid shots into your scalp. These help cool the swelling and deter the immune system from attacking the hair. But once they start to wear off, the hair starts falling out again. You can only get them 1x per month, and realistically it's not a long term solution because it starts putting dents into your scalp.

What about for skin colour? Are those more effective / longer lasting or is there nothong to be done?

What do you mean?

Maybe their neighbour has vilitigo (causes patches of skin to lose colour) as well - I understand that alopecia arreata is more common in those with vilitigo

Oh, yes! I have heard of that, but no I have not experienced ant signs or symptoms of that.

What do you think is the cause of it?

I think it's a mix of a diet and stress. I was also stuck between a rock and a hard place with my diagnosis. My mother died 3 weeks before I had to move back to school, I didn't want to...but it was my senior year and if I didn't go I would have just screwed myself. I'm finally home, and settling into a full time job...Things were really hectic and unstable for a long time, so I think that contributed too.