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IAmA 25F with absolutely no body hair, AMA!
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 😊
alopeciatakesover45 karma
Yes!! Sweat hurts so much but other than that nothing else frequently gets in my eyes.
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 😂
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
- 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
Pacifist_Socialist16 karma
I guess the curtains carpet do does match the drapes!
Congrats; easy maintenance!
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.
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
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.
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
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
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.
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.
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)?
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 🤗
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❤️
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
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.
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.
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
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.
MiniMan56133 karma
Does stuff fall into your eye more with the lack of eye lash and brows?
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