Replies to This Discussion

Permalink Reply by BaldGirlsDoLunch.org on October 11, 2009 at 2:44pm

Hi Mina,

Welcome.

When I hear about alopecia research, I have an admitted soap box to stand on. Follow my blog at baldgirlsdolunch.org . I post breaking news about alopecia research. I was months ahead of the n a a f in reporting to alopecians that the FDA had black boxed and then removed the dangerous Raptiva from the market while the n a a f site was still telling alopecians to join a Raptiva clinical trial.

I like to do background investigations to locate the original sources and links to the journals publishing alopecia research...though it's a very anemic field of research to be sure. No hype. No pitch to make families believe that if only they would just give more money a cure or better treatment would be around the corner. Research is a long slow slog in all fields , not just aa, and the majority of work leads to dead ends - it's the nature of research.

I support all the efforts for basic science research and look respectfully at attempts to try one more thing that could work for autoimmune conditions...but a healthy dose of reality goes along with that as well. People want hope; realism is better imo. So the blog aims to balance both. It's that balance that hopefully is leading more people to the joy of a beautiful alopecian life.

We'll start an rss feed so alopecians can follow along more easily with the blog's research updates.

Thea
baldgirlsdolunch.org

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Permalink Reply by Melissa Francis on October 11, 2009 at 6:21pm

Hi Mina,
Welcome (again!) to AW. I am pretty new on here too - great site though...
I am so grateful that I got on here, my mentality about this condition changed practically overnight :)
Hope ur well,
liss
x

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Permalink Reply by Mina Carlson on October 11, 2009 at 7:06pm

Leslie, Thank you I can see that you will be a great resource of information. Melissa, glad to hear you may find comfort here. I am greatful for this sight too and for Baldgirlsdolunch. I am also going to get Leslie's book. I am looking forward to reading it and learning and laughing about our new lifestyle.

I have tried a few different meds, and topicals as well as many other types. I have decided this last month, I will leave it to nature. I am going all natural and start to take care of my body. At least I have control over that. I can have fun with wigs, makeup and eyelashes. And thank goodness, we have those!

There is more to life then Hair, I'll look at the "silver lining" I guess, I dont have to shave, or wax any longer... ;-) so let's start with that one. Have a great night!

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Permalink Reply by Mary on October 12, 2009 at 4:16pm

Welcome, Mina! You have a great attitude. Your body is going to do what it wants. You're right about the "silver lining". I love having smooth legs all the time!

Take care,
Mary

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Permalink Reply by Mina Carlson on October 12, 2009 at 4:47pm

Thanks Mary, and glad to be a new friend... Its nice kowing we have some who undersand what we are going through.

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Permalink Reply by Kimberly Rolon on October 12, 2009 at 9:35am

Hi Mina, welcome! Your positive attitude it great!!! This site will be of comfort and inspiration. It has help me to cope and move on because life is short. Glad you joined!!
Hugs,
Kim

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Permalink Reply by Mina Carlson on October 12, 2009 at 4:48pm

Thanks Kim,

Glad I did too. Looking forward to learning more about how we all can help each other conitue our Alopecia journey.

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