Alopecia World
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first off, I am so excited to have found this website, I have had alopecia universalis for over a yr in a half now, and I have never had the opportunity to talk to someone who has been going through the same thing.
From the looks of it, a lot of people on the website seem to be dealing with it great. At first I thought it was temporary but I have seen 3 different dermotologists who have said that there is always a 50/50 chance that my hair could grow back and there is a 50/50 chance that it won't. I cannot seem to come to terms that It will never come back, and there has to be something to cause it, right? I have gained a 100 pounds since i was diagnosed from depression and have not had the confidence to go out in public without a wig. Am I juss being vain? Has anyone with universalis ever had their hair grow back??
From the looks of it, a lot of people on the website seem to be dealing with it great. At first I thought it was temporary but I have seen 3 different dermotologists who have said that there is always a 50/50 chance that my hair could grow back and there is a 50/50 chance that it won't. I cannot seem to come to terms that It will never come back, and there has to be something to cause it, right? I have gained a 100 pounds since i was diagnosed from depression and have not had the confidence to go out in public without a wig. Am I juss being vain? Has anyone with universalis ever had their hair grow back??
Replies to This Discussion
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Permalink Reply by Lee on
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Hi Kristina!
I have been AU for almost 4 yrs now. I don't think you are being vain for wearing a wig at all. When you are used to having hair, it's hard to go out bald. I never have. I was depressed or awhile too, and had to go on antidepressants. Eventually, I got off them. It's a situation that you will get used to. If you talk about it more, you may feel much better. I promise, it gets easier.
I only had regrowth once from a high dose of prednisone. Probably not the safest way.
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Permalink Reply by Lori Van Decker on
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Hi Kristina, and welcome. I have had more experience with universalis than I care to admit. I went through, and probably still go through, coping processes and mechanisms while dealing with ridiculous attempts to treat this and the "50/50" theory. I've had no hair for 25 years, and hair on and off for 15 years prior to that. I've only just recently started having fun with it. It takes a long time to adjust. You have to face the possibility that it might never come back. But what you don't want to do is waste too much of your life worrying over something you can't control. Don't be too hard on yourself. And remember that there is nothing wrong with overcompensating by working out and staying healthy -- and discovering your inner-killer abs! That has become my latest plan of attack. I highly recommend Zumba classes as a fun way to get started! And in Zumba class, doo rags are considered high fashion! :)
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Permalink Reply by Bald and Fabulous AKA Terri on
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Welcome Kristina
I also have alopecia universalis, and been this way for many years. It started with just bald areas on my scalp but over the years I started to notice arm, leg and other areas the hair disappearing. I have not needed to pick up a razor blade for years!!! Until the day I decided to shave off what was left of the hair on my head. LOL. I have a great doctor that for over 10 was treating my head to keep the hair growing. Was it all easy to deal with .... HELL NO!!!!. Just read my blogs. But with this site and the wonderful people here I have learned to find me again.
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Permalink Reply by Pat Latina on
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Welcome Kristina - you've come to the right place. You sound just like me when I first came across this wonderful site. I've gain lots of confidence, but still have a ways to go. lol!! But this site - WOW - I've made friends that understand and there is always someone here to share with. I have AU for 3 yrs now but the last year has been the best one yet, I look forward to just being me. Wearing a wig for me is not vain at all, I wear it all the time, it's just part of who I am. Just like I wear make-up and clothes and jewlery it's an accessory I love to wear. Yes, I wish I had my ow hair, but my Freedom Wig is the next best thing. You'll soon see that this is the place to be.
I'm sure we'll talk (write) again. Happy New Year!!
Pat
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Permalink Reply by Petra on
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Welcome Kristina, For some of us it takes quite a long time to get used to being bald while others adjust much more quickly - like anything else in life. It took me a long time - Years. I have had Alopecia since I was 18, lost all my hair for about 2 years and then it grew back. Then it all started falling out again in 1993, with on and off hair regrowth, but it was never the full head of hair that I used to have. Prior to last year I was a wig wearer if I went out. I was pretty insecure about my lack of hair. I realized that I was just wasting all those precious years away not doing the things that I wanted to do because of my insecurity about what others might say or think. I thought it would help me if I could find others that were like me and that's when I found alopecia world. Just knowing that there are others out here like me has helped me tremendously. I have joined a yoga class, done Zumba classes (way to much fun) and usually just go out wearing a hat or scarf - except to work I still wear my wig :-) The thing is this can be permanent so don't let it define the rest of your life
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Permalink Reply by Ann Gee on
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Am new to au as well although I have experienced aa in the past off and on. I agree with Pat- wearing a wig is not vain. I too treat it as an accessory. I wouldn't go to a business meeting in bare feet! Wearing a wig allows me to be who I am as I try and wear the same styles I liked when I had hair. Also I do not want people to mistake me for a cancer patient and feel bad for me. Last thing I need is misdirected pity:) I am who I am and continue to be so. Only my best of friends and closest family have seen me without a wig. Of course these are also the only people who have seen me with old sweat pants and a worn out Tshirt as well. Cheers!
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My daughter has had AU for 1 1/2 years and she is having regrowth right now. It is coming in over about 30% of head and eyelashes and brows are starting. There is more hair everytime I look. She took Sulfasalazine for 6 months which may have started it but had to go off over Thanksgiving due to a rash. The hair is still coming. She never goes without her wig and even sleeps in it because she sleeps better, go figure. That is a personal choice. Good luck and don't let alopecia rule your life, my daughter inspires me everyday. She was a highschool senior and a cheerleader when all of her hair fell out in 2 weeks. She taped on a wig and only missed one game cheering.
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Hi Kristina -- I got AA 7 years ago -- it took 5 years for all my hair to fall out --and some of it has grown back, but only in spots. I shave my head and wear a wig. Like you, it changed me a bit...I used to be an exercise fiend, but the wig is too sweaty and itchy for the gym now. I think the thing that changed the most for me is not feeling like myself any longer...I had always thought of myself as "sporty" -- putting my long hair in a pony and taking off. I felt wholesome and natural...now, not so much. But, as with any change in my life, I've made the best of it I think...just look for all the ways to be grateful for AU and it seems to work well. By the way, I don't know if people with AU have had it grow back, but I know those with AT have.
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HI Judy....why should you give up your "sporty" ways. I have AU and for years I let it determine what I could and could not do. I gave up so much that I love to do, including swimming. As a child I use to swim constantly but when the alopecia started (first AA) I stopped. First because we (family) thought that the chlorine might be causing it and then because it was too hard to hard the bald areas in the water. Today Im bald and recently made my way back to the pool and loving it. It was tough the first few times and every once in awhile I have have terrifying moments but I find some strength and carry on. It does get easier, and we cant let alopecia win and determine what we want.
Best of luck to you.
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Permalink Reply by Tuesday on
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I don't think you're being vain! I have had AU for 10 years - at first I'd go out bald but I grew tired of stares. I do wear scarves in the warm weather which still gets some stares but so be it. I'm not up on the latest AU research but my gut feeling is since it is genetic based - AU is triggered somehow and then, like other autoimmune conditions, it's "out" and will wax and wane as it sees fit! There are people on this website with AU who've had regrowth. Me - in 10 years - I've had nothing but those weird white hairs. I'm not holding my breath!
I find kundalini yoga and hatha yoga and meditation have helped me immensely with stress and also helped me lose 25 pounds. Perhaps that's a good place to start - some quiet meditation?
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Hi there!
I got Alopecia after the birth of my first child and I too went to many dermatologists who didnt say for sure whether it would come back or not. Mine has come and go many times. But I have to say - it never gets easy when it comes out again. It's like going through it all over again. I too wont let anyone (except my husband) see me bald. I just got a wig that grips to my head because I lived in fear that my wig would blow off or be pulled off by one of my kids. I finally feel confident with my new hair. Keep your chin up - I look at it that I hope that this is the worst thing that ever happens in my life and that my familys' health is good! Stay strong! Good luck!
Robbin
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