CARF ...interesting info

So I was reading through some recent posts in this forum and came across CARF. Decided to look it up online. There's a clinical trial For FFA. You know the funny thing?? My last derm is one of the physicians working on the trial! The one I had a terrible experience with!! The one who made me feel like I shouldn't even be in her office. The one who told me I could pick which medicine to take! She's also over the support group for FFA in my area. She barely looked at my hair or hair line. She barely looked at me! I am blown away.

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Replies to This Discussion

Permalink Reply by Annie on October 1, 2015 at 5:10pm

I got the same response, momto1.  My first doctor also said I have female pattern baldness without even looking at my hairline.  I read somewhere that the average woman sees three different doctors before being diagnosed with ffa.  Just think of all the wasted time spent waiting to get in to see the doctors!  I'm sure lots of people with ffa give up due to expense and frustration before they get to the third doctor.  I personally think ffa isn't as rare as healthcare providers think it is.  It's just underdiagnosed. 

Permalink Reply by momto1 on October 1, 2015 at 6:18pm
I totally agree with you! I also wonder if there are more women that have FFA that don't know it. I have a feeling that some women have mild cases of FFA that burn out after losing a few cm. what do you think?
Permalink Reply by Annie on October 2, 2015 at 4:40pm

I imagine there are a lot of women who are losing their so slow that they don't have a clue they have ffa.  I realize now that mine started at least two or three years before I was diagnosed.  I always had a lot of fine, short hairs around my face that started to disappear when I began having perimenopausal symptoms.  I figured it had something to do with the hormonal changes, and didn't think twice about it.  (After all, those baby hairs were always a nuisance!)  I had no pain or itching until February 2013 when my entire head got extremely tender, and stayed tender for weeks.  I started looking for answers on the Internet and found about ffa.    

Permalink Reply by LoriO on October 9, 2015 at 10:55pm

I went back and looked at pictures of myself as far back as 2006.  In 2006 I had my usual hairline, but it definitely started receding in 2007.  It was so slow, I didn't even realize it, and I sort of looked better for awhile.  It wasn't until 2012 that I really started to see irritation and loss right in the middle, and seek medical attention (and even then it took switching health plans to Kaiser that I even got a doctor who had any idea what it was) and it didn't become alarming until early 2015 when I went off Birth control pills.  So, I think I've really been losing hair slowly over 9 years.

Permalink Reply by momto1 on October 1, 2015 at 10:02pm

That makes a lot of sense. I have seen three derms..lol still no FFA diagnosis though. Ive wasted so much time and money! 

Permalink Reply by LoriO on October 1, 2015 at 12:36pm

I lost faith in CARF when I went to their Research page and only found a few articles that were years old.  There is more out there if you look for yourself.  I don't believe CARF is real.

Permalink Reply by momto1 on October 1, 2015 at 10:02pm

hmmm interesting! 

Permalink Reply by Gilly on October 9, 2015 at 7:52pm

I went to CARF for a referral when my consultant  derm told me he didn't to see again as there was nothing more

he could do for me and to just keep using the protopic he gave me until my ffa burned it self out.  The doctor CARF sent me turned out to be a pathologist.  I know i'm depressed by my hairloss but I don't need one of those just yet.

Permalink Reply by MJ on October 10, 2015 at 7:27am
My dermatologist is also a pathologist. when I first saw her, she had my biopsy results sent to her so she could look at the slides herself. That was when I knew I was with the right doc. Unfortunately she is so busy, getting an appt every six months is not easy. She is at the Cleveland Clinic and I am in Michigan.
Permalink Reply by gmodo on October 10, 2015 at 9:24am

Hi, I live in Columbus, OH and my derm has referred me to the Cleveland Clinic. That was two months ago and the only contact I have had is with someone who said they would refer me to the dermatology dept. and mark my case as urgent. I would assume I am waiting for the same person you have seen. Should I continue waiting or should I be looking for other options? I feel like I am sitting around doing nothing while I wait for a phone call from CC that may not be coming any time soon.

Permalink Reply by MJ on October 10, 2015 at 4:06pm
Dr. Bergfeld is my doc. She is amazing. But I am not sure what to tell you about the wait. I was due back this month but she had been on a medical leave and it sounds like they have only scheduled to appts for hairloss for this month so at this rate I am not sure when I am getting back in. There is one other doctor for hairloss but I do t know the name. You could call again and see what they say and ask if dr. Bergfeld is making referrals elsewhere.
Permalink Reply by gmodo on October 10, 2015 at 5:16pm

I think I may try that. She is the dr. I was referred to. I am glad to hear she is good, just in case I ever do get in. Thanks.

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