So I have this delima.... I've had alopecia since October of 2005. That's a little more than two & a half years now. Mines AA and pretty bad. I'd say I have maybe 25% of my hair left. I keep it cut short & hide it under my wigs. This has made huge changes in my life. I haven't been swimming at a pool or to the lake in almost two years. I did go to the beach once but was a nervouse wreck the whole time. I am a "Summer Girl" and used to do this stuff all the time. Since I figure my hair will never probably all come back anyway, I'm thinking of just shaving it all off. However I don't know when. When is the right time to do it? My friends think I should just look at the calendar and pick a date & stick to it. Sounds like a good idea, but again I get so nervous even just thinking about it. So I was wondering if anyone had any advice for me on this matter. I really want to be able to just throw on a bandna & jump in a pool or go on the jet ski's again. I know I'll look weird but maybe it's better than it being all patchy. I don't know. Then I'm also afraid of the shock that I might have after I've done it & wished that I hadn't. So if anyone has any advice I would truly appricate it.
XOXO!
~Tiffany

Views: 12

Comment by Cheryl, Co-founder on April 2, 2008 at 10:08am
Tiffany, 2 years is a long time not be doing what you enjoy. So my suggestion is to get all your friends together, have a camera and make it a celebration of freedom and friendship. You are lucky you have supportive friends.

It will be nerve racking to do at first, but getting back to enjoying your life will make it all worth it. I found that with me, people stared for the first little while and then things quickly died down and either the stares have stopped or I just don't notice them anymore. Either way is all good.

In my case I went out with friends for the first time bald and by the end of the night I was having so much fun and enjoying the fact that I was no longer hiding, that I was so glad that I took the step. Like you, my friends and family were supportive. The only thing I regret is that I wish I had pictures to celebrate the step of moving on with my life. That's my 2 cents ;)
Comment by Cheryl, Co-founder on April 2, 2008 at 10:54am
There is also another forum discussion on the site that you may find more information.
Comment by brian kirchman on April 3, 2008 at 6:56am
letting your hair or lack of it in our case rule your life and hold you backreally sucks i know. i got over it pretty qick iv only had it for a year now AU i guess since i have no body hair at all. i figure since you wear wigs most the time anyway i say go ahead and bic it free your self and have fun. who cares what others think your freinds and family are all that matter and you know they wont judge u
Comment by Debi on April 3, 2008 at 10:55pm
You sound so much like my 18 year old daughter. She was, where you are, and still is. However she did shave what little hair she had left off. It was
so emotional. She is so strong. She very seldom cries. This was one time she couldn't look herself in the mirrror. My heart ached for her. But , you know what? It was all uphill from there. Well, not straight uphill. Her wig, that she already had been wearing was so much more comfortable and the hair didn't stick and pull. She is still hiding it from most of her peers, which I feel is a mistake. But that is her choice. She only has a few months left to her senior year and then off to college, which she is so looking forward to. She is so OVER highschool. You two sound so much alike. I bet you could help each other. She doesn't want to be a part of any club. She doesn't want to talk about it to anyone. She says the less she thinks about it, the better off she is. Maybe she is right. I would do anything to take this away, however I can Not. Please feel free to e-mail me @ dkkfitness@hotmail.com. We should exchange pics. I do not feel comfortable @ this point to put my daughter's pics for all to see. Even though she is beautiful!!!
Comment by Canadian Girl on April 4, 2008 at 12:35am
hey Tiffany!!
I just got diagnosed 1 month ago and have already shaved my head......i have to say it was the most liberating thing i've ever done and am happy to have done it!! I did exactly what Cheryl was talking about. I got together with my closest girlfriends had a shot of Tequilla (hehe) laughed a little, cried a lot, listened to my fav. tunes!! It was hard but i'm glad it was done. I'm a waterbaby, i grew up boating and wakeboarding......i would never let anything get in the way of my watersports....... let me know if you wanna chat?U on facebook?
Comment by kastababy on April 5, 2008 at 5:46pm
When I shaved my head because of my alopecia for the first time, I had a pair of clippers and my sister did the honors. My mother was having a fit and crying the whole time, so we put her out of the house until we were done. I think it was more traumatic on my mom and my sister than it was on me. My sister is extremely protective of me, and actually helping me to shave my head made her even more so. It's all about when you feel comfortable doing it. One day, you will wake up and just want everything gone, and that is fine!
Comment by Vicktoria (Katya's mom) on April 8, 2008 at 8:29pm
My daughter is AU and has been for about 6 months. She does not have a vacuum wig yet, but she just tapes hers and goes swimming all the time. We live in So. Cal and have a pool so it would be a real bummer not to go. Her hair dresser gave her tape that does not come off in water. I'll get the name of it and post it on this site. Also, a vacuum wig is a great option. You can do any type of sport, as well as swimming, in a vaccuum. We are waiting for her's to be made. When she first got AA (about 1 year ago) she just wore hats with hair wigs with cute hats on top and swam all summer without issues.
Comment by Debi on April 9, 2008 at 10:58am
My 18 year old has been dealing with AA since she was 15. She is now AT and I beleive progressing to AU. She keeps it a secret from most except family and 3 of her close friends. Last May she wore a humane hair lace cap wig with tape. She tried to swim in it but it got trashed. She now has a soft vacuume, she has not tried swimming in it(we also have a pool. We are in Pgh.) She finds it extreamy hot and says she will never be able to wear it this summer. What is the name, style #, etc. of your daughter's wig? She(your daughter) is beautiful. She looks alot like my
daughter. We just ordered a shorter blonde Amy Presence swim wig. However, I don't believe these look as natural. We will see. What does you daughter do about eyelashes and eyebrows? Do her friends know? Does she ever go without her wig? How are you doing with this? It's hard?
Comment by Vicktoria (Katya's mom) on April 9, 2008 at 1:34pm
The wig my daughter is wearing in the picture is a custom made wig that is not a vacuum. We don't have her vacuum yet. The wigs she wears (we have 2, it's much easier that way), were made with a mold of the head, just like a vacuum. The cap is lace with a small vacuum area at the part. This also makes the part look natural. She does not have to tape it with daily wear. She only tapes it for swimming or during very windy days. She also sleeps in it during sleep over parties and tapes it then. Most kids at her school know she wears a wig. It's a small private school, we are lucky that she has not had any problems with teasing. Some of her friends have seen her without the wig, but she will not go out in public without it. She also uses silicone based eyebrows that she glues on or just draws eyebrows in. The silicone based ones look great but havings some bangs help the eyebrows look more natural. In this picture, her brows a drawn on and she still had lashes. She no longer has lashes and either wears liner or fakes. I hate to see my 12 yo girl be so fakes out with wigs, eyebrows ect., but she just goes with the flow and doesn't pay much attention to it as long as she feels she looks pretty. She has handled everything very well, I am worried that as she get's older it will get more difficult. I, however, was having a much more difficult time with this but am now getting used to everything.

Just wondering, what is Pgh. I don't know that initial. Am I going to feel really dumb when you tell me what it stands for? Also, please email me if you want to trade tips and ideas. Any info helps.
Comment by Debi on April 9, 2008 at 2:06pm
Pittsburgh, Pa. Thank you for all the good info. We really have to talk sometime. We go to a woman that caters to women with hair lose. What can I tell her is the manufacuter of your wig. It sounds wonderful. This may be the piece we are searching for. The best of both lace and vacuum.Does she get hot in it?

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