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Alopecia Universalis

Join today to meet, support and share information with others who are also living with all loss of hair on their bodies.

Website: http://www.AlopeciaWorld.com
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Latest Activity: Sep 24, 2023

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Comment by Shas on April 19, 2009 at 11:01pm
I dont know anyone around where I live have no hair, or wears a wig. Plus i live in such a small village. Anyway I lost some spots on my head when i was just a baby but as I got older, I started losing more. I tried so many medience to get my hair to come back. None of them worked. I have been careful with my hair not to pull them because they do come out easy. Anyway I lost it all while I was in school. It was hard. I didnt really have any trouble with school with kids. They all like me. :)I have came through long ways for many different things in life. I use to hide on people when i dont have wig on me, or when we have company early in the morning while I was sittin on chair just tryin to relax, but when they come, I run as fast as i can to go to my bedroom and I feel safe that way. haha, I know. I was a chicken. This is when i was around 11 or 12 years old. I didnt want anyone to know about me. MY family are very supported and really cares about me. They helped me a lot. I trust them my whole life. MY 2 brothers are really good to me. even thought we did fight a lot. (haha)we was just kids. But when someone wants to make fun of me, my brothers go tell them up for me.I was shy. Im not anymore. Thank god! :)Anyway Yeah i wear make up so i feel normal. I feel so much better wearing it only when Im going out. When its something risky, I go find something and dont care how i look at all. Im weird that way. But everyone is different right? But Theresa I loved that quote you just said. Thats awesome.
Comment by Theresa on April 19, 2009 at 4:03am
Welcome Ronda....I hear your pain and discomfort, please know you are not alone. I also have a facial hemangioma or vascular deformity. Nearly every day I wear make up to cover it up...biologically it is related to alopecia I understand on a cellular level. When I don't wear make up I find the staring uncomfortable. I met a woman who lost her hair to chemo and was walking around bald. She said she has gotten negative remarks but her answer is: "My hair may come back someday, but your ignorance never will." I LOVED IT! It's going to be okay, Ronda...with God's help we can get through anything in life! I'm convinced.
Terry
Comment by ronda on April 19, 2009 at 12:16am
it feels good to know that there are other people, that understand what i am going through. it is hard to go day to day without hair on my head , but it's almost unbearable to go day after day without facial hair and so time comsuming to create eyebrows and put on liquid eyeliner. i felt inspired by many of the comments i read, but i could never go without a wig in public and i don't like the way my face look without facial hair so i have to use makeup . i spend alot of money buying wigs. i sew a stocking cap into the lining of the wig and use wig glue to keep it from blowing off my head. i can't afford a wig prostesis. so i do what i can to feel normal . thanks everybody for giving me a chance to express my thoughts. i don't have anyone to talk to about this, my family loves me ,but its easier to pretend that this problem does'nt exsist.well i've never had support so i am happy that alopecia world is here.
Comment by Pam Glover on April 17, 2009 at 9:03am
hi sandy and everyone else

there is a story to my attitude. my stepdaughter was diagnosed with her second bout of breast cancer in aug 07. my hair started to go the same time hers did from her chemo treatments. we went thru the handfuls of hair in the shower, hair on the bathroom counter, etc etc at the same time and finally shaved what was left at the same time. it was shannons strength that i drew on and actually felt good that i could go through that with her, share something of what she was going through, even tho it was something as trivial as hair. We shopped for wigs together, designed "OUR" scarf together and shared a handheld fan on the endtable between our chairs for the hot flashes.

any time i started to feel bummed out, and i sure did when the facial hair went, id just remind myself that its just hair, not my life.

we lost shannon on feb 12 of this year, just 2 short months ago. i may be bald as a bowling ball, but im alive!!
Comment by Ray on April 17, 2009 at 4:07am
No bad hair days is good for me also.

Not having body hair is brilliant!!!!!
Comment by Pam Glover on April 16, 2009 at 10:44pm
Oh forgot to mention the good stuff!! I love not having to use hair remover or bleach on the womans stache!! Love not having to shave anywhere. Am thrilled at all the money I save on hair care and hair care products and makeup! And my husband loves that I can shower and be ready to walk out the door in 15 minutes. Best of all NO BAD HAIR DAYS!!!
Comment by Pam Glover on April 16, 2009 at 10:37pm
Hi Everyone.
I was diagnosed with AA last Jan, but all body hair started to go and by Aug all I had left was a small circle of pit hair in one arm pit and the bottom lashes on on eye. As with many people here the facial hair was the worst to lose, not only because of how I looked but the dust and stuff I get in my eyes and breath in thru my hairless nose. I have a house full of pets and a pasture full of horses so hair and dust are a fact of life. I have all kinds of allergies which I had gotten used to handling but this was a whole new ballgame. I use refresh eyedrops to clean my eyes, and aircleaner in the house to try to help and have a hard time horse grooming.

Ive heard about the permanent makeup, but Im scared to death to let anyone near my eyes with a needle. Im going to look into the eyebrows tho. In the winter I wear wigs when I go out,just for the warmth factor lol (CANADA here) Around the house I live in big baggy mens hoodies and wear scarves when I go out. I couldnt find any that I liked so I designed my own.

Im also going thru menopause, yahoo, so with the hot flashes anything on my head just makes it worse.

I did try two treatments a liquid and then a cream that was supposed to cause irritation. Only outcome was a rash down the side of my face from the gunk getting on my pillow.

My family is full of auto immune disorders. Im the only female in a large family that does not have thyroid problems. There is also junvenile diabetes and rhumatoid arthritis. There is also alot of psoriasis. Years ago my mom had a small bald spot, had shots and it grew back with no further occurances. Recently one of my nephews also discovered a bald spot but it filled back in on its own.

Reading the nail problems has scared me. I have notice much more splitting and chipping but never thought to associate it with AU. My fingertips have been very sensitve also. Is that also associated??

I cant believe how good it feels to be able to talk about this with people who know how it feels. Friends and family have been very good for the most part but they really have no idea how self conscious one feels going out in public without facial hair. Ive gotten much better at that and I even go bald in the car now lol. I have one sister who freaked when I took my scarf off when we got home. She lives far away tho so dont have to worry about that LOL

Anyway, will end there. Once again, THANKS for being here!!!
Comment by Coleen on April 16, 2009 at 9:11pm
Hi, I just joined AU, and I haven't had hair on my entire body for about 1 1/2 year now. Sometimes I wish I would get it back, but I have pretty much accepted the fact I may never get it back and I am ok with that.
Comment by Theresa on April 5, 2009 at 2:46pm
New to Alopecia World, but not to AU. Have had it about 45 years. I am glad my children have not had it so far. It is an unusual disorder in our culture where women in particular are defined by their appearance, including hair! But, it has shaped me in part into the person I am, so it's okay. I'm very open about it now...used to not be. If they had the cure, I wouldn't take it...shaving, grey/white hair, tweezing...no way! would love to chat with others with this disorder.
Comment by baldmatt55 on March 20, 2009 at 2:03am
Ladies, kudos. The more I visit this site, the more and more I realize how GORGEOUS bald women are. I'll be honest, when I used to see bald people, especially women, it threw me off guard. We live in a hairy society that's just tough on anyone who doesn't fit in, ESPECIALLY on women. But once you get over that, you REALLY start to realize how much hair really does often block that pretty face. So FLAUNT IT LADIES!!!! Let everyone see that pretty face because I'll be honest, there's prettier girls on this site than there are on Myspace, Facebook, and Twitter COMBINED!
 

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