I’ve Been Living With Alopecia Universalis For 19 Years And I Show The Good And Bad Parts Of It (23 Pics)
This happened 19 years ago. One morning, I woke up and found a pile of hair in my bed. The next morning, I saw more hair on the pillow and the nightmare began. Alopecia universalis runs very quickly – I lost all hair on the scalp, face, and body for only a few weeks. I was shocked! I was depressed.
My friends were asking me: What’s wrong with you? My answer was: I do not know, I have no idea! I was not prepared for this. The feeling is terrible – I was afraid that something terrible is happening inside me. Something that can kill me. I tried to get treatment, but my own life turned to hell for several years. I was looking for salvation in modern medicine – I swallowed countless colorful pills, I had a lot of corticosteroid injections, I used different lotions, foams, creams, or ointments. I was looking for salvation in traditional medicine – garlic, herbs, acupuncture. I felt guilty that the disease affects my family. My parents were helpless and they were suffering. My girlfriend was with me all the time, she supported me, she loved me … and she was suffering because the only thing I was doing was to seek treatment. Nothing else.
One day, I thought: I must stop this and continue to live normally. I should humbly accept Alopecia Universals as part of my life. I have to allow others to accept me, to be myself again. “Hey,” I said, “you have to keep doing what you love!” I love to be creative, this is one of the things that makes me feel good. I started the project Eyebombing Bulgaria – to humanize things that are broken, ruptured, punctured, tangled, or crumbling with googly eyes. I believe that this project will give a little smile wherever people see the eyes that will take them away from their boring everyday life.
Now I have a loving family and two wonderful children – for them, I am just special, not different. Sometimes I ask myself: “Why do I have Alopecia?” I still do not know. Maybe to win the game with a sense of humor. That’s how I feel right now!
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My older (11 years) has this since before my birth. He didn't let anyone outside family see him without a wig until he met his girlfriend at 35. But for me, this is so normal, and when I meet (or just see) someone without hair it feels so familiar that I instantly like this person :)
I have a friend with alopecia, and the amount of people who treat her delicately because they think she has cancer is crazy. She had a couple of beers at a party we had, and others looked at her with dismay. They assumed she shouldn't be drinking because she must be on some heavy medications because of her "cancer". She doesn't even try to explain anymore, she shouldn't have to.
Love your sense of humor! Thank you for sharing your journey and struggle with us!
Yes! I have undiagnosed pain syndromes and hives... and spent so much time every week going to Drs, getting all sorts of treatments. For years I would have at least one to five appointments a week! Then, about two years ago I decided to give myself one week off from Drs per month...it was wonderful and I felt exactly the same, sometimes better... that has snowballed into having to go to only 2-4 appointments a month now, and I'm still undiagnosed but I'm living my life again, so happy to be away from the depressing cycle of hope and disappointment !
I believe how hard was for you , but it's great the way you turned this problem in to a solution , by accepting yourself the way you are and spreading your positive message . I'm very happy , things get better with time . You are a great person .
I have a young friend who has Alopecia. She is beautiful and started a modeling career after she got it to promote awareness and to particularly help young women who have this condition.
hi, I'm not sure if you will notice this, but you are a huge inspiration with so much positive energy!! Today has been one of the absolute worst days of my life(don't want to get into any specifics) but you made me smile for at least a few minutes, so thank you. :)
I’ve had alopecia universalis since I was a toddler. Going through adolescence was very hard, as were the teenage years, but now I am a woman in my early 40s and not only have I come to accept it, but I love it! It has enhanced my life in ways I could never imagine had my hair never fallen out. Great post, OP!
This was great! Thanks for helping spread awareness and information about alopecia universalis. I have alopecia areata. Senidng lots of love!
Jealous as f**k I'd take no hair over hair any day. We for the most part as humans have stopped needing hair ages ago
Completely off topic, but are you polish, perchance? Because on the last picture, besides the ubiquitous Gp-5 gas masks, there is also a Polish Mc-1 gas mask. Yeah, I know, way to focus on the wrong thing... but hey, I might not know much about alopecia, but I do know about gas masks...
When I was a teen I had a mate with Alopecia Universalis, because he had no hair on his head he'd grown a thin layer of fat over his scalp. I used to love giving him head massages
But honestly it's not like your 7 foot tall and green..there are alot of dudes that are bald..alot of us are going bald...so you should just blend right in
he's not just complaining about it. he made it clear that he considers himself very lucky to have a loving family and he stated the good things along with the bad. this post is something beautiful from a beautiful person looking to raise awareness for others like him, not a post about how much he hates having no hair and how unlucky he is.
Load More Replies... My older (11 years) has this since before my birth. He didn't let anyone outside family see him without a wig until he met his girlfriend at 35. But for me, this is so normal, and when I meet (or just see) someone without hair it feels so familiar that I instantly like this person :)
I have a friend with alopecia, and the amount of people who treat her delicately because they think she has cancer is crazy. She had a couple of beers at a party we had, and others looked at her with dismay. They assumed she shouldn't be drinking because she must be on some heavy medications because of her "cancer". She doesn't even try to explain anymore, she shouldn't have to.
Love your sense of humor! Thank you for sharing your journey and struggle with us!
Yes! I have undiagnosed pain syndromes and hives... and spent so much time every week going to Drs, getting all sorts of treatments. For years I would have at least one to five appointments a week! Then, about two years ago I decided to give myself one week off from Drs per month...it was wonderful and I felt exactly the same, sometimes better... that has snowballed into having to go to only 2-4 appointments a month now, and I'm still undiagnosed but I'm living my life again, so happy to be away from the depressing cycle of hope and disappointment !
I believe how hard was for you , but it's great the way you turned this problem in to a solution , by accepting yourself the way you are and spreading your positive message . I'm very happy , things get better with time . You are a great person .
I have a young friend who has Alopecia. She is beautiful and started a modeling career after she got it to promote awareness and to particularly help young women who have this condition.
hi, I'm not sure if you will notice this, but you are a huge inspiration with so much positive energy!! Today has been one of the absolute worst days of my life(don't want to get into any specifics) but you made me smile for at least a few minutes, so thank you. :)
I’ve had alopecia universalis since I was a toddler. Going through adolescence was very hard, as were the teenage years, but now I am a woman in my early 40s and not only have I come to accept it, but I love it! It has enhanced my life in ways I could never imagine had my hair never fallen out. Great post, OP!
This was great! Thanks for helping spread awareness and information about alopecia universalis. I have alopecia areata. Senidng lots of love!
Jealous as f**k I'd take no hair over hair any day. We for the most part as humans have stopped needing hair ages ago
Completely off topic, but are you polish, perchance? Because on the last picture, besides the ubiquitous Gp-5 gas masks, there is also a Polish Mc-1 gas mask. Yeah, I know, way to focus on the wrong thing... but hey, I might not know much about alopecia, but I do know about gas masks...
When I was a teen I had a mate with Alopecia Universalis, because he had no hair on his head he'd grown a thin layer of fat over his scalp. I used to love giving him head massages
But honestly it's not like your 7 foot tall and green..there are alot of dudes that are bald..alot of us are going bald...so you should just blend right in
he's not just complaining about it. he made it clear that he considers himself very lucky to have a loving family and he stated the good things along with the bad. this post is something beautiful from a beautiful person looking to raise awareness for others like him, not a post about how much he hates having no hair and how unlucky he is.
Load More Replies...
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