Comment

Comment by Jules UK on November 28, 2012 at 5:07pm

Wishing you the very best tomorrow, Celia! If Dr Harries wants willing volunteers for any feedback about having FFA, he knows where we are! X

Comment by KarenGinny - Iowa, US on November 28, 2012 at 4:57pm

Good luck to you tomorrow Celia, hope you get all your questions answered. It will be great for all of us to hear what your doctor says. And Good luck to Pam also. I often wonder about how many women have this condition but don't know what it is and can't afford to go to the doctor for a proper diagnosis. We have fairly good insurance but my insurance company wouldn't pay for some of my treatment -cortisone injections- saying that it was cosmetic - and not a medical procedure. So having hair is not medically necessary, apparently. That really made me angry. I'll bet there are a lot more women suffering from this than we realize. And since most doctors have never heard of it, they aren't getting any help. very sad.

Comment by Liz on November 28, 2012 at 4:37pm

All the best for tomorrow Celia xx

Comment by MairiM on November 28, 2012 at 4:29pm

Like everyone else, looking forward to what you and Pam can find out for us. All the best for tomorrow, Celia - hope it goes well.

Comment by Heidi Short UK on November 28, 2012 at 1:10pm

Celia and Pam just a quick note to wish you both a sucessful or informative meetings with your doctors. We are all looking forward to hearing any new revelations, although I think us as a group are quite knowledgable on FFA, and fast becoming experts ourselves!!! Best of luck we will be thinking of you!x

Comment by CJ- Christine from Ottawa Canada on November 28, 2012 at 8:01am

Hi all,
In a way, having all these different treatments makes perverse sense. They don't know much about the disease, so they are using agents that have worked somewhat for some people.... That' s the first thing. Secondly, even if they knew lots about the disease, in the same way they know lots about psoriasis, different treatments work differently on each patient... Which is why it's so important to have all options known and available...not always the case.
I am often disheartened that so little is known and that there is so little research happening. On the bright side for us, our numbers are growing, which is too bad for the new folks being diagnosed but better for us all. More patients means more commercial interest in finding a treatment or cure. But of course it will take time.
We are starting a cicatricial alopecia support organization in Canada with our second meeting next month. Are any of you part of local/ national groups?

Comment by Debs on November 28, 2012 at 2:49am

I agree totally with you Pam, we are all on different medication and even when we have the same drug we are being given different instructions on how often to use it... Look fowards to hearing from yourself and Celia and see if there can be some definitive treatment plans for us all to follow. Best of luck to you Pam & Celia. XX

Comment by PamW San Diego, CA, USA on November 27, 2012 at 10:10pm

Celia, good luck to you on Thursday! Wishing you all the best. One thing that I find amazing is that there are 20 members in this group and there aren't two of us who are getting the same treatment. Some doing nothing, some using clobestasol, some on plaquenil, some using minoxidyl, some taking finestaride, some on prednizone. No wonder we can't figure out what works and what doesn't! I am seeing a new dermatologist at UCSD on Friday morning. It will be interesting to compare what he says with what Dr. Harries says. In any event, can't wait to hear from you Celia!

Comment by Debs on November 27, 2012 at 9:23am

Celia, good luck on Thursday. Thank you for taking our questions with you to Dr Harries. I hope you are given something to help you with FFA. Thinking of you. XXXX

Comment by CJ- Christine from Ottawa Canada on November 27, 2012 at 12:04am

Also I'm now on finasteride, which my insurance company won't cover since it is a drug for men.I just started so it's too early to tell if it helps.
The whole thing is just too much somemes, it's hard not to feel stressed. That said, I'm at a conference with a bunch of other patient advocates from organizations repressenting a broad spectrum of diseases and I can honestly say that if I had to choose a disease in the room, I'd choose ours.

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