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Comment by LeslieAnn Butler on March 27, 2016 at 4:24pm

I understand all your confusion, fear and apprehension! While I was writing the book (If Your Hair Falls Out, Keep Dancing!), I interviewed a number of women, various ages, from many walks of life. You are not alone in your feelings. I would suggest reading it -- many women have been helped, with both the emotional and how-to advice. There are new medical breakthroughs that are not in the book, but those are found easily on this site.

Anyway, to answer a couple of your questions, I have had alopecia universalis for about 40 years. There are a number of tips on how to reach acceptance in the book. For me, I had been working in a wig store before I lost my hair, and at that time wigs and falls were very stylish, so it wasn't as hard for me to increase my wig wearing.

The hardest part was losing my eyelashes but I have false ones that I wear now.

I have five European hair custom made lace wigs which I wear when I don't have to worry about weather because they lose their style in rain/dampness, and styling costs $45 each time. (I have a section in the book on how to wash and style your own human hair wig, but sometimes I don't have the time.) I have about 8 synthetic wigs, some in the long style you see me in most, and some in shorter styles. I am finding some of the shorter styles, as I mentioned before, a lot of fun! And I don't care if people get confused with different lengths and looks because a lot of women with their own hair can go from short to long with extensions, and do different things with colors all the time.

I have one Envy wig, that is Petite Page (my head is small). I like it quite a bit and it's a cute style, but it didn't have enough hair so I had to add wefts from old wigs. Yes, Amore is comfy but I find that most of their wigs don't come with enough hair and I always have to add more. For shorter styles I am liking the Paula Young brand " Chase" and as I said, Sheridan, and Shannon which are both rooted. None of these quite touch the shoulder. I sleep in a very short PY style called "Meg."

And a hint that's not in my book: If you are blonde, you can darken the roots of any wig using a permanent marker in dark brown. It won't actually be a dark brown, but it changes the roots to dark blonde which looks more natural.

In the summer, yes, wigs can be hot. It helps to wear a wefted wig which has air flow. And synthetics which can be easily washed and dry in hours, unlike human hair. 

Does that help?

Hugs!

Comment by Dianna 845 on March 26, 2016 at 10:17pm

Hi Leslie, so you have been dealing with this a while?? Do you have any tips on how I reach acceptance? This was a sudden occurance. Rapid decent into almost no hair. It continues to shed. I have it mostly shaved with exception of the top. Thus far that is. I didn't have the gumption to shave it yet. How many wigs do you own? Hope you don't mind me asking. Do you have another perspective? I know you wrote a book. Someday I'll read it. I have been in a wig since January. I find to go to Ulta and try on foundation challenging. The wig I'm wearing now is shoulder length. Too long for warm weather. Anyhow my self esteem has taken a huge hit. I am neglecting myself. Something I am not accustomed to. At times I feel like I'm heading for a breakdown. However I see plenty of smiling faces on here. I'm buying my wigs on line. The local store which isn't local is all permatease wigs. I was waiting for a sale. However I'm gonna have to proceed as sale hasn't been offered. It's a envy brand wig. Might you know if " envy" line is comfortable? I find Amore to be comfy. The best so far. I'm truly scared about summer. Do you have any issues in summer? I know many questions.... I appreciate your thoughtful comments. I need to get happy again. Wow I've aged 20 years in one. Can't wait to be happy again. Hope it comes. As I'm aging along with hair loss it's hard for me to look at myself.

Comment by LeslieAnn Butler on March 25, 2016 at 4:00pm

I don't know about "Haley." I am wearing Sheridan right now and it is very comfy!

Comment by LeslieAnn Butler on March 25, 2016 at 3:59pm

Yes, there is a tiny bit of tease, but not overly. Just enough to hide the wefting. I have other wigs that are mono tops and some that are completely hand-tied lace and they are beautiful, but this is fun and inexpensive and I don't have to worry about the rain since it is wash and wear!

Comment by Dianna 845 on March 25, 2016 at 8:09am

Hi Leslie and thank you for response and photo. You look very nice. Does that wig have permatease? I'm waiting for a sale to purchase " Haley". Do you have any experience with that one? I have "Emma"'by esoterica. It was pricey and is so uncomfortable i can't wear it. I need shorter wig and cooler. Thus will be my first summer in a wig. I find I'm getting anxious. I'm trying to start a collection. I've e had so many losses in recent times and hair loss just tops it off!

Comment by LeslieAnn Butler on March 24, 2016 at 11:18pm

Hi Dianna, I have quite a few wigs. Some are custom European hair, but most are synthetic. I used to wear long, but I am starting to enjoy shorter styles now and I absolutely love Sheridan from Paula Young. It is quite inexpensive (about $70) and I get the Swedish blonde rooted color. It looks adorable! Here's a hoto

Comment by Tanya on February 15, 2016 at 10:50pm

I get mine from wigs.com, get on their newsletter (I'm sure other sites will do a similar thing), and they'll send you emails when they have sales, especially around the 4th of july or other big holidays, they do sales of 30% off. So mine ended up costing me about $700 instead of the full $1.2k.

I like the lace front, because it makes the part/hairline look a little smoother. You can give it a little trim if it sticks out too far. Most people won't be getting too close to inspect your forehead, especially if the hairline has side bangs draped over it. (And probably, we think people care a lot more about what's going on with our hair than they actually do)

I don't like any of that cap/tape/glue stuff, so I don't use it. (I'm lazy, the extra effort makes me unhappy.) Most of my wigs have stayed on just fine without, at least during day-to-day activities. You should be fine unless you're a huge fan of rocking out to heavy metal.

The only times I've had issues or had to take preventative measures was:
1) Cannonballs into pools. You'll go under water, your hair will remain on top. Humiliating? Yes. Funny? YES.
2) Roller coasters that do the loop-de-loop. I bring a cute scarf to drape over the top of my head to pin the wig in place and just hold the ends with one hand. Everyone's too busy screaming to notice anyway.
3) This is probably the most unfortunate one. If you're on your back, if you know what I mean, and someone pins your hair down, the angle that you're at will slide that puppy right off. Use tape, or get on top.

Wind is not an issue, I've never had it come off from a gust of wind, but if it's extra crazy, I feel better with a hand gently holding it down, just like you would to keep natural hair from becoming too messy.

I'm a stay at home kind of person, so I don't know if it's affected the amount I go out, but going to the beach and camping isn't a problem. I usually wear my older/cheaper wigs for those things, and sometimes bring one to change into if it's going to be a full day sort of thing after the beach. There's nothing pleasant about a moist wig cap. For stuff like camping with my close friends, I sometimes just wear a baseball cap, because you get all gross as it is, everyone is tired and hot and nobody cares what anyone else looks like. I still bring a compact to draw on my eyelashes and eyebrows, because I don't even look like people without them, but the head hair, I find, is not as big of a deal, especially to people that are close to you.

Comment by Dianna 845 on February 15, 2016 at 10:11pm

Hi Tayna, thank you for your informative response. I feel that due to this condition I will spend more time indoors. This makes me worry. I have a $1200 Jon Renau. Have no idea how to style it. Hair really isn't all that soft or comfy either. My synthetic is a dark color. I used to be blonde.I guess I'm not crazy about either piece. Yes, I realize importance of bangs. Find it hard to believe they can't make better quality wigs( meaning can't tell) the synthetic I have was alnist $500 the lace part looks like a screen to me..Also do you wear a cap under? How do I keep it from slipping? There's nothing to pin to. I pray I can't adjust to this.

Comment by Tanya on February 15, 2016 at 9:55pm

Hi Diane. I've got a bunch of wigs, maybe 9 by now. So, the bad news is that with wigs you usually get what you pay for. The good news is that if you save for a good one, and treat it well, it will last you a long time and keep you sane. I started off with synthetic because of the price, and they were okay, but I decided to try human hair, which turned out to be much better.

I personally really like wigs by Amore for their cap. (Same cap for human and synthetic hair) It's got a silky layer at the top of your head, so it doesn't itch, and the rest fits pretty good as well. I tried one by... I want to say Rene of Paris, and it was really heavy and thick on top.

To keep your wigs from looking fake, first of all, pick something close to your natural colour, because if it matches your skin tone, people will pay less attention to it. The fakest part of most wigs is usually the part where the wig ends and your face starts, so stay away from things without bangs that part in the middle of your head. Bangs will hide that, but they're not for everyone, especially synthetic ones. They're not comfortable against the skin. I prefer long-ish side bangs, with sort of a Little Mermaid kind of swoop, so they stay up and away from the face and lead the eye away from where your hairline should be. 

You'll get to be okay with it in time. I'd suggest chopping off the rest of what you've got. It made me more miserable to look at the few sickly strands I had left than to just have a nice round head. Plus you get the added bonus of washing your head along with your face, which is actually quite nice. It'll be hard for a while, but try not to worry about how you look, especially when you come home. Step in the front door, take that sucker off, and throw a cold wet paper towel on your head. Sure you'll look ridiculous, but it feels pretty great.

Buy yourself a comb with one of those pointy ended handles. Great for random itches and to fish out stray hairs that have climbed into the cap.

The great news is that if you thought you were pretty before, you'll feel pretty again, because you're pretty, and that isn't just because of your hair. In fact, it's sometimes a good thing. You can totally customize your look however you want. There's plenty of people that wear wigs for fun, and not to cover something up, and nobody bats an eye. So it's also totally acceptable to get yourself a cute hairdo in a bolder colour, if that's what makes you feel good.

It's been about 7 years for me, and there's still stuff that I'm self conscious about, but a lot of stuff has become so much easier once you get into the frame of mind that it's just a thing that sometimes happens to people, and it's just something that you don't let get in the way of more important things.

P.S. If you shave your head, rub your head on the carpet. It's probably the most horrible/funny sensation in the world and you can know that 95% of the people will never know what that feels like.

Comment by Dianna 845 on February 15, 2016 at 6:37pm

That would be great!!!! Let me know how you make out.

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