Replies to This Discussion

Permalink Reply by katkat on October 15, 2009 at 8:58am

Hi there. I am happy to help you wade through the world of wigs:) Have a look at www.pieceofmindhairdesign.com All the best,

Cara

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Permalink Reply by Stephanie on October 15, 2009 at 10:07am

Thanks, Cara. Where are you located? Is it true the Virgin Indian Remy is the best? Then I read that swiss lace is more natural but less durable. Eek! I cannot even believe that I am talking about this! I looked at your pictures and they are beautiful so I feel very hopeful.

Stephanie

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Permalink Reply by Christy on October 15, 2009 at 10:45am

Hi, Stephanie,
I have had AU off and on since I was five I just ordered a full lace wig and my insurance co. is going to reemburce me!! Go to your Doctor and get a letter of medical necesity and send it to your insurance Co. (if you have one) and most will reimburce you after you get approval than order your "cranial prostetic" and keep your invoice. Hope this helps with the cost.
Christy

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Permalink Reply by Stephanie on October 15, 2009 at 12:37pm

I did get a letter from my doctor and my husband tried to put it through for my current hair piece, but now I need a full wig. I still don't know if the insurance will pay for the the original one but if not, I suppose I can try again now that the situation is more severe. Thank you for the advise, Christy.

Stephanie

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Permalink Reply by Jennifer Krahn on October 15, 2009 at 10:56am

Hi Stephanie,
Tough question as their appears to be alot of choice. I went to a salon for my first piece, (the one in my profile pic) and I loved being there. It was the first time I felt pretty in a long time, and the owner had alopecia herself so gave me a ton of advice. My one piece is human hair which I like because I can still play and style it. The cap is comfortable. I then went online and bought a rene of paris wig which is synthetic and I love it. People have no clue it's a hairpiece and it's really easy to wear and comfortable. (I actually get a ton of compliments on the short piece...more than I did for my real hair...ironic) You have to find a hairpiece you feel comfortable and pretty in. I know I like both of mine. If my condition stays longer I am going to invest in a vacuum piece as they look gorgeous. Whatever you choose you will look beautiful in. You are stunning.

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Permalink Reply by Stephanie on October 15, 2009 at 12:42pm

You're very sweet, Jenn. I certainly have not been feeling attractive lately! I heard that synthetic wigs are lighter and therefore more comfortable. I guess I just need to go out and try a bunch and then go from there. Now, if you were to exercise, which would you wear? It seems that I may need a few options.

Stephanie

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Permalink Reply by Stephanie on October 15, 2009 at 1:44pm

Great ideas. I will look into all that. Yes, I am eager to get the full wig. My hair loss has been so drastic that there is no question it will be a matter of weeks.

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Permalink Reply by Ronda on October 16, 2009 at 11:06pm

Hi Stephanie,
I am 50 yrs old and have Alopecia Universalis.
I loss all my hair last june.
I have no family members with AA either.
Mine started out with just a patch and then it all went.
I did have some stress, but nothing I thought would cause this.
But we never know.
I tried all kinds of things too.
I had the shots in my scalp too.
And took different meds because I was going through the change too.
I wonder if it hormonal?
I keep hoping mine will come back but still nothing.
I am trying the Latisse for eyelashes.
I think I miss my eyelashes and eyebrows the most.
I feel like stubs on my scalp.
Just wanted to tell you this website has some great people.
They have helped me alot.
Just to know that you are not the only one going through this.
There are lots of us.
Would will meet lots of great people.
I am wearing wigs.
I still haven't got brave enough to go free all the way.
I do at home and places where noone know me.
But I can't do it at work because i think people would think I was sick and ask all those questions.
Just let me know if I can help in anyway.
Take care:)

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Permalink Reply by Stephanie on October 17, 2009 at 7:23am

Hi Ronda. Wow! You, too, must have been shocked and bewildered by what was happening. At first I figured it would be just the one spot as those are the pictures you see when you do an initial search on google.

Isn't it crazy that we still do not know much about this disease or how to treat it? I mean, it's obviously pretty prevalent. Even though it is not life threatening it certainly causes a lot of distress and I for one would like to know why my body is doing this. It's not good enough to explain the cause as "stress", especially as that basically blames the sufferer. I know that I did not bring this on myself.

Anyway, each day seems better. I have now told both of my children and need not worry if they happen upon me without the wig. I guess I need to get some type of covering for the house though as people inevitably "stop by" here. I know it could be worse and that I am focusing too much on myself these days. I look forward to NOT thinking about it all the time.

Thank you for your note and support. It means a lot.

:) Stephanie

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Permalink Reply by Tallgirl on October 17, 2009 at 12:44am

I am 57, and have used synthetic and human hair wigs since 1969. A synthetic wig lasts 6-12 months, can't be near heat, but only costs $100-$250 for a nice one. Find a shop with expert stylists, and try a few on. Once I bought 2 for myself for my birthday. I go bold, and pick colors or styles I could never normally have with my thin/missing natural hair.

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Permalink Reply by Stephanie on October 17, 2009 at 7:32am

Hi there,

Yesterday I was talking to my stylist and said that I am going to get a fabulous and fun wig. I may as well have something that is nice. And, I will talk about having a second, lighter, and less expensive one (synthetic?) for when I am teaching my classes. I have been advised that there are hats with hair also for this purpose which may be an option for me, however I have never worn that look before and it seems I've had enough changes these past three months.
I can see the advantages of having a "good hair day" every day and am trying to think of it that way. My hair has always been high maintenance.

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Permalink Reply by Crystal Crochet on October 17, 2009 at 11:23pm

Im wearing wigs due to Alopecia Universalis for over 28 years. First, all wigs I wear are synthetic. I had very thick black hair before it fell out. I found that Rene of Paris or Noriko synthetic wigs that I had custom cut after I recieved them....lasted the longest and had the best life. I have also worn Revlon wigs and they are better out of the box but the hair is not as thick and they will not last as long. Raquel Welch has some beautiful wigs but I haven't bought one of them yet. They are ready to wear out of the box but do not have enough hair for me to be comfy with them and the price. Buy a couple of color rings from different wig manufactuers and it will give u an idea of the color you are trying to match. Go to a couple of high end wig/chemotherapy prothesis salons and try on wigs. Find out what you like. You may have one of those shops order one for you if you like....or do what I have done and get established with one online company and order from them all the time. That way if I have to return something, then I have a credit - minus the restocking fee. No prob vs. a 100% price on the Visa

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