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Comment by Debi on April 9, 2008 at 5:42pm

I went to that web site but it wasn't right. Are you sure it's exactly as you spelled it? Why can't she wear ponytails? She may just need to cut a few wispys at the nape of her neck and then allow the ponytails to be abit looser. My daughters wig is really nice. They don't really flow the way her own hair did.

Comment by Vicktoria (Katya's mom) on April 9, 2008 at 2:59pm

The lady that made Katya's wig is Lari Vreeken in Los Angeles. www.larivreeken.com. The wig that Katya wears now is not as versatile as a vacuum and you also can not wear pony tails with it, but it looks very natural and no one can tell it's a wig unless they knew her prior to alopecia. Even then people kind of do a double take, because the color is exactly the same, it's just thicker hair From what I have heard from people w/ vacuums, there are more natural style options with it. Also, I know one other girl in our area that wears vacuum wigs and she said that hers is not hot. She rides horses and wears her wig in the summer. California is not humid in the summer. Maybe that is the difference. This girl had her wigs made in New York. I am not sure of the name of the place, but I can find out. The wigs that Katya wears now are not hot at all. They are also pretty easy to wash and need minimal styling.

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?

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 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 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 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 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 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 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

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