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 and my hair loss started when my mother died at 52 from COPD/CHF. There are 3 categories of Alopecia; areata (patchy hair loss), totalis (hair loss above true 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.

Proof from today; https://imgur.com/gallery/8qCGY5M

Here’s my before photo: https://imgur.com/gallery/NpDdx

Here’s a look at the different stages of the hair loss. My first patch was the one at the nape of my neck. https://imgur.com/gallery/R68E83N

(Sorry for the low quality, my iCloud refused to download the photos)

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 😊

Comments: 109 • Responses: 38  • Date: 

MiniMan56133 karma

Does stuff fall into your eye more with the lack of eye lash and brows?

alopeciatakesover45 karma

Yes!! Sweat hurts so much but other than that nothing else frequently gets in my eyes.

thebuddywithglasses22 karma

How do you turn the Negative to Positive? :)

alopeciatakesover34 karma

Great question! I truly believe that I was given Alopecia for a reason. I’ve coped fairly well with it and I’ve been able to help those with it get through the rough stages.

I’ve also turned most of my energy towards working out. While I was going through the hair loss I joined a CrossFit gym and I never looked back.

I also don’t have to pay for Brazilian waxes anymore so0o0 that’s prettttty sweet 😂

questionsqu12 karma

How YOU doin?

alopeciatakesover10 karma

Great!!

thebuddywithglasses4 karma

Love the optimism! Keep sharing that positive vibe!

alopeciatakesover4 karma

You got it 😉

ChopsMagee2 karma

Do you have fun wig buying? There must be loads of types to play with.

alopeciatakesover5 karma

I used to enjoy it, now I almost feel more uncomfortable wearing a wig than I do bald. I’m like THIS DOESNT FEEL NATURAL!

BatmanLovesCrypto21 karma

Hello ! Thanks for the AMA! - Is this bad for your health in any way? - Do you try to conceal it, by using wigs or something for instance? (Not that you need to, you're beautiful either way !), but just from a psychology point of view. - Would you say it is more practical now than before (I'm thinking for epilation for instance?) - Do you miss it or is it normal now?

alopeciatakesover28 karma

  1. Not that I know of! I think that’s why there not much research done on it because it’s almost solely cosmetic.

2.initially I did try and hide it, but then I realized I feel more beautiful bald versus trying to hide behind a wig. 3. Depends on how you look at it. My morning routine is harder because I have to draw on eyebrows and put on eyelashes whereas before I could literally take a shower and go out the door. 4. I miss it a lot but I’m ok that it happened. I just want to feel normal and this is far from it lol

Thanks for the questions!

BatmanLovesCrypto10 karma

I did not think of the eyelashes, it's true it must require some work. Have you thought of tattooing the eyebrows?

Thanks for the answers, be strong! ;)

alopeciatakesover24 karma

I have thought of tattooing the eyebrows. I think I’d rather spend the extra 10 minutes making them the way I like them versus having something permanently on my face cringe

SnackTimeAllTheTime1 karma

Good idea. Eyebrow trends (is this the right term for this?) absolutely change over time, especially in regard to width and spacing.

alopeciatakesover2 karma

Yes! I’m so self conscious of how they look too I’m worried that if it were permanent I’d drive myself batshit crazy

antonserious15 karma

Am I late for hairless pussy jokes ?

alopeciatakesover18 karma

Ha! No jokes, it’s a thing and it’s great.

Pacifist_Socialist16 karma

I guess the curtains carpet do does match the drapes!

Congrats; easy maintenance!

alopeciatakesover19 karma

I refuse to complain about it!

Sargent_Caboose9 karma

Is it possible to use hair surgeries like Bosley (if those even work) would they even take? I’m sorry if that’s a bit rude but I’m fascinated that this exists.

alopeciatakesover22 karma

I am SO happy you asked this. The problem with hair in regards to Alopecia isn’t the follicle, it’s the immune system. The immune system recognizes the hair as an allergen, therefore triggering antibodies to destroy it...I would love to study the immune system more in-depth. Ive looked into different treatments that might help reduce inflammation and the common denominator seems to be leaky gut, gluten intolerance, etc.

Ive found that I still have scattered peach fuzz on my face and scalp that grows significantly in the summer months but I haven’t researched that enough to say why it happens.

Halostar5 karma

Could someone with Alopecia theoretically take a bunch of allergy pills to slow its effects?

alopeciatakesover5 karma

Good question, I don’t think so? When I started taking oral medication for this it was always an immunosuppressant, such as prednisone. That was short lived seeing as the side effects of the drug are less than appealing.

Sargent_Caboose5 karma

That’s very interesting. Hopefully research into CRISPR and Cas9 would be able to apply to use or maybe even a form of immunotherapy could work. Stay hopeful science is working hard!

alopeciatakesover3 karma

I am hopeful to be honest!! I would love to get involved in safe clinical trials to help research

invictus818 karma

Might be a silly question but if a cure existed, would you take it? Assuming no side effects, and a normal rate of hair growth.

Honestly I think you look fantastic!

alopeciatakesover16 karma

If it were a cure that promised I would never lose my hair again, absolutely-friggen-lutely. But right now that doesn’t exist. Although Alopecia CAN spontaneously go into remission, you will always have Alopecia. So as of right now, I don’t know if I could handle it coming back always knowing it may fall out again.

williejh7 karma

Do people try and avoid you because of this? Has your love life suffered as a result?

alopeciatakesover12 karma

Nope and nope. I don’t find anyone’s treated me any differently. Guys still show interest

MutleyGru6 karma

Well we would you’re a sweetheart!

alopeciatakesover7 karma

Thank you! It just makes me unique as someone once told me 😊

Vintergatan276 karma

Does anyone else in your family have alopecia? My mom has it and I’m pretty nervous that I’m going to get it too.

alopeciatakesover15 karma

No which is the kinda shitty part. During the initial stages of the diagnosis the dermatologists really harped on the fact that it’s genetic and someone else must have it. I was like I swear I’ve never even heard this word let alone seen it in my family.

Vintergatan276 karma

Do you have other autoimmune diseases as well? I know that my mom has several. So far I only have vitiligo, and it’s not that big of a deal to me because I have very fair skin anyway, but I worry that it’s a sign that more are coming!

alopeciatakesover13 karma

I don’t thankfully. Autoimmune disease is so unpredictable so honestly my only advice is to just ride the wave. What’s going to happen is out of your control.

wolfram426 karma

Does your alopecia include eyelashes and nose-hairs?

If so does that make it hard to breathe?

alopeciatakesover8 karma

Yes everything is gone. I only find that when I’m super sick that raw dry nose feeling is exacerbated and fairly painful

k4zz4m5 karma

[deleted]

alopeciatakesover7 karma

Are you male/female? I honestly felt amazing when I shaved it all off. I couldn’t control the loss but I could control my behavior/outlook after I shaved it off. I did buy cheap wigs which were, meh but helped going to formal events.

k4zz4m6 karma

[deleted]

alopeciatakesover19 karma

Fuck em! You do you and rick your bald. Own it. Educate people on Alopecia. You have 1 person in your corner! ❤️

IridescentBeef2 karma

What drugs (if any) have you tried to treat it? Did you already try the JAK inhibitors (xeljanz/jakafi)?

alopeciatakesover1 karma

Too many harmful side effects

froghat2k4 karma

Is it possible you are just really really stressed out?

alopeciatakesover16 karma

Fairly possible! I’m also a first responder for a city, so I’m like baseline stressed 😂

froghat2k7 karma

Just tell your doctor to prescribe you Xanax for one month. Boom, your hair will grow down to your knees! :)

alopeciatakesover9 karma

Omg! I know it. I think I’d benefit from some Chinese medicine, reflexology, reiki type healing❤️

LouisianaTexan4 karma

Does your body still get goosebumps when you get cold, aroused, or awed?

alopeciatakesover5 karma

Yes! I’m surprised how many times I get asked this. I love getting goosebumps 🤗

0munrom3 karma

Do you have a bitchin hat collection?! Or do you just yolo it without most of the time?

alopeciatakesover5 karma

Honestly, not really. But I find that when I travel I will take the time to find a nice baseball hat that I’ll wear. I usually wear them to mow the law or run, but I never feel obligated to wear anything. Oh I have a nice collection of winter hats too, cause the northeast is COLD

vol4ok2 karma

Does arm pits still smell or sweat that much after Alopecia?

alopeciatakesover2 karma

YES. Not so much like physical sweat but they still smell lol

BjParkes2 karma

You are so pretty. I’m glad you seem to embrace it because you seem perfectly healthy and happy. Such a gorgeous smile!

My question is.. how did you react when you first started losing hair?

alopeciatakesover2 karma

Awh well thank you, I definitely love the new me but I can’t lie I miss the simplicity of my old life.

When this all first started I was also grieving the loss of my mother and I coped with this like any other Irish catholic would and I said ok welp time to move on. I just kind of accepted it. I didn’t like talking about it initially but over the years I’ve become much more open and confident about it !

out_of_serotonin2 karma

Can you tell us more about how you got alopecia? Like is it stress caused from your mum passing? Rest her soul.

alopeciatakesover13 karma

Yes absolutely! I was 20 or so, finishing up my junior year in college in May when I noticed a small quarter sized patch of hair missing from the back of my hairline. I thought it was from the headbands I used when running. I went to get my hair cut a few weeks later and the hairdresser was like uhm...you’re losing a lot of hair and have a few small bald patches. Go to the dermatologist that day (surprisingly they had a cancellation) and they did a biopsy and viola Alopecia diagnosis.

Fast forward though the summer months, I would get subcutaneous corticosteroid shots that would help reduce the inflammation in the scalp so the hair could grow but the hair loss was too rapid for it to be effective. For some that works! So over that next year everything started falling out: leg hair, eye brows, private hair, eyelashes...it was terrible. I literally transformed into a new woman and my mom wasn’t there to get me through it.

As of now I don’t even see a doctor annually for it because there’s no effective treatment for where I am at.

Mollusktshirt2 karma

When you were initially losing your hair, did you just let it go or did you shave your head? If you shaved your head, at what point did you do so?

alopeciatakesover2 karma

I tried compensating for the loss with some treatments from my derm, but when they got out of hand and I had palm sized bald patches I shaved it all off..probably around November.

WhaWhatt1 karma

What’s it like to not have to worry about shaving anymore?

alopeciatakesover3 karma

Beautiful actually. Razors are expensive!!!

AltPerspective1 karma

Do you have other autoimmune issues? I have areata and a host of other strange annoying problems. I'm wondering if there's an underlying immune disorder I could get treated.

alopeciatakesover3 karma

Nope nothing else. I’ve heard it’s common for them to come in pairs

LsgtSpepperD1 karma

Hello!

I have one question!

If I understand this correctly, you have zero body hair? How did this affect your skin? Or is it completely irrelevant?

alopeciatakesover2 karma

Nothin! No hair. I’ve noticed an increase in acne though, which I’m sure is some reflection of what’s going on internally. Maybe I’m allergic to something I’m eating? I’m not sure

RobotCockRock1 karma

Do you ever get or make Arrested Development references?

alopeciatakesover1 karma

No I don’t understand the reference

undeadmanana1 karma

Have you noticed a difference in your swim speed?

alopeciatakesover2 karma

I’m not a swimmer!

misterioso_monk1 karma

Is it hard to put on eyelashes? I just got through chemo. My eyelashes are just about gone

alopeciatakesover2 karma

Initially yes it was hard. Now it’s just routine and I haveit down to a science. Biggest tip is to put the eyelash glue on the eyelash as well as your eye and let them both get tacky so they. Stick

Jungletouch-2 karma

WTF is this? With or without hair you're hot as shit AND it grows back! I'm a 33 year-old dude and my fucking hair is falling out and NOT growing back. Oh well... When life gives you oranges, make applesauce.

alopeciatakesover5 karma

Just trying to raise awareness for Alopecia and there’s the very realistic possibility it won’t grow back! So we’re in the same boat my friend.

Jungletouch1 karma

I'm just goofing around :)

alopeciatakesover2 karma

Rock on with yo bald self ;p