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Permalink Reply by BBQueen on January 2, 2016 at 12:19am

Lo- I have lost about 1-1/2 to 2 inches all around my face in about 4 years. The damn thing wont stop. I also think that stress and worry played a big part. I have bangs that barely cover it but it looks stupid becuz they are so thin now. It makes me so sick and mad!!! How much have you lost? How are you coping with it?

Permalink Reply by DragonandFox on January 2, 2016 at 7:39pm

Hi BBQueen,

it's kind of uncanny that I just opened this email today because just this evening after I came home form work and was applying the clobetasol on my scalp was I fretting over how much hair I've lost also along my hairline. It was really bad at 1st (a little less than a year ago), but oddly in the last 5 months, a huge amount has fallen out and now my top hair is much thinner and also my bangs are thinning.  I am trying not to stress over it!!  I mostly feel really sad and I can not by any means fall into a depression!!  It takes so much energy to figure this whole thing out. I haven't hd acupuncture in a few weeks but return this coming Thursday, so I look froward to that. I also was prescribed another medication, so who knows that might help. Next week I'm calling Dr Shapiro's office in NYC to meet with him and participate in Dr Olson's research study, but I've come to be resolved it's not a cure, just the participation might make me feel better.

I wish I could say something encouraging to you.  Only that I feel your pain, literally.

Permalink Reply by BBQueen on January 2, 2016 at 9:06pm

Drahon&fox, what new medicine are you starting? The top of my hair is thinning also. I never thought this could happen. I feel like one in a 100 million and not in a good way. The thought of wearing a hair piece or a wig for the rest of my life makes me sick, but im tired of dealing with this. I feel like cutting my long hair and getting on with life. I dont even want my husband to look at me. I really hope finestride will help soon. Its only my 3rd day on it....

Permalink Reply by sallylwess on January 2, 2016 at 10:29pm

Dear Ones, as I read about your experiences with this condition we all share, I feel so many emotions.  I also literally feel your emotional and physical pain.  I join you in understanding the frustration of not being able to do anything about this disease that continues to rob us of more than our hair.  I too am sick and mad and just plain tired of thinking about it.  I have lost a circle of about two inches across on the crown of my head as well as several inches all around the front hairline.  I realize I first started seeing the effects of FFA in 2006, so I have had it for going on for ten years.  Nothing has worked for me, but I am hopefully going on finasteride.  It was offered to me nearly two years ago, but I didn't take it.  Now, I am willing to try it if it will stop this loss.  I too wish I could say something to encourage you.  I also feel like one in a million and not in a good way.  I wear my hair piece everyday now.  Thankfully, my husband does not seem bothered by my "new look."  He is very supportive.  Also, I just want you all to know that I am most grateful for you.  I feel less alone because of you.  I hope for a cure.  I pray that those younger than I do not have to suffer from this because of the studies being done.  Thank you for sharing your stories.  You help me live with my own story.  Blessings in 2016.

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