Comment

Comment by Debs on April 12, 2013 at 6:18pm

Sharon, clobestasol does not stop the hair loss, it just treats any redness/itching that some people get with scarring hair loss. I advise you get a definate diagnosis because lupus is a condition you need to get medical help for ASAP as it effects other parts of your body - not just your hair.

Comment by Shar on April 12, 2013 at 1:18pm

I have been diagnosed by biopsies of either discoid lupus or LLP. I have scarring hair loss behind both ears & up to top of front of head. I have also had 2 basal cells on a part bald spot. My latest dermatologist wants me to use clobetasol 60cc 2 x a day with 5 refills. He said nothing about stopping it for 2 weeks at a time (which is what I've read). Has anyone ever hear of this? Thanks for any help. -Sharon

Comment by Jules UK on April 12, 2013 at 10:20am

Hi Celia, that sounds fantastic, and really generous of you! I'd love to come please. Any of those dates would be good for me. Could I bring something to contribute -such as a pud? And if I could give anyone a lift, that's no problem. Caro is nearby I know. This is really exciting! Thank you. X

Comment by Debs on April 12, 2013 at 4:05am

Hi Lace, glad you are still liking your Meena wigs, I have become addicted to wig buying now, I have found a few websites in the UK that often do half price deals and I check them out regularly and pick up what I want at big discounts. I have a new Drew wig coming soon, I need to get it cut so I can wear it to work in the future. I am 'growing' my hair now and slowly wearing slightly longer wigs. AC, thanks for the YouTube info - I find it very reassuring watching other people talking about their supplemental hair. Bernadette, welcome to the group, please let us all know how your wig purchasing goes, maybe you will be able to wear your weave for quite a long time yet. XXX

Comment by Lace on April 12, 2013 at 2:09am

Oh, Debs--

Loving the new do! I haven't been on the boards for some time, so I'm just now seeing it. It's so wonderful on you! I'm thinking about going longer, but I still haven't opened my other 'Meena' wig yet. Still, there's something about it being spring that makes me want to look a little different. We'll see!

Comment by Lace on April 12, 2013 at 2:06am

Hey Judy and Pam:

I have not been on this board for awhile, but I would love to be included if you two make plans for meeting in San Diego.

Best, Lace

Comment by AC from CA, USA on April 11, 2013 at 9:47pm

Also, Bernadette and others--

The whole idea of a wig has been a big deal for me. I am an au natural earthy kind of chick, so conceiving of myself with a wig was a hard concept to embrace.

My daughter suggested I check out YouTube and I stumbled on a woman who has scarring alopecia who has done a gazillion wig reviews (cool, helped me find wigs to try as a start)but listening to her journey, and watching several of her videos that really touched on the alopecia experience, just switched my whole perception around wearing wigs.

Here's a link to her initial video reveal about having alopecia for anyone interested: http://youtu.be/zJuiPpz6Gww

Besides a whole boatload of videos just focusing on wig reviews, she has several videos that go over her decision to shave her head bald and that just document her positive attitude in dealing with scarring alopecia.

You might find it empowering to watch a few of her videos: search the Jo Ann Gray youtube channel for alopecia as a keyword, or just browse through.

Also, I absolutely love the wig reviews because 1) I'm not interested in spending a fortune on any one wig, 2) it's helpful getting user reviews from an alopecia sufferer about wigs that I can then just hunt down online by exact brand and model, 3) she often showcases the shorter styles that I also favor.

Also, will share that I found some other very excellent videos on youtube relating to how to make a wig hairline look more natural. Invaluable!

Comment by Bernadette on April 11, 2013 at 9:42pm

Hi Aimee,

Thank you for your comforting words. Today was not a good day, but I'm taking one day at a time.

Comment by AC from CA, USA on April 11, 2013 at 9:22pm

Hi Bernadette,

I'm on the west coast, so I cannot offer info on the wig salon in NYC. But, wanted to say hello and welcome. Totally understand what you're experiencing...it's a struggle to accept what this is and also to find your own livable peace. I'm a couple months beyond my biopsy results and I still bounce back and forth with acceptance and coping ability. I'm also about to try the wig experience, if for nothing else, just to get on with what is and can't be changed. And also to stop feeling so nervous/enslaved to worry over what to do about the further progession that will quite likely happen for me before burnout arrives. Best thing about this site is knowing there are people here who can understand what you're going through in your head and can also provide a place where you can bounce thoughts off. All the best to you!

Aimee

Comment by Simone NJ USA on April 11, 2013 at 9:00pm

Hi Caro:

Thanks for your advice!!! You sound upbeat! That's great!!! Cheers!! Xx

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