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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Sounds like my experience. Where are you located, or what region. I am curious if we have the same doc.

momto1, Just a thought...  Do you have hair loss in your eyebrows?  Mine haven't been affected by ffa yet (fingers crossed!!), and I practically had to stand on my head to get my doctor at the time (a Harvard grad) to take a look at my hairline.  I think most doctors expect that ffa will start with the loss of eyebrows. 

My eye brows have always been thin. But they have gotten thinner over the last two years and they itch especially one on the side where my hairline has been affected most. I'm 36 and all of this is just devastating. I've been two three derms all who just said it was female pattern hair loss. I don't believe it. I have constant pain at my hairline...itching on my scalp and body. I feel like there's no hope when it comes to doctors.

Where are you located? I have had a pretty good experience with my doctor in Chicago. I'm just a little bit older than you.

I am in North Carolina.

What treatments are you using? Sorry if you already posted the information. I'm always interested to speak with other 30-something women with the condition!

I used rogaine religiously for 14 months. I made a commitment to use it for at least 12 months to see if it could really work. I just got off of it completely in July. I weaned myself off of it.  . I had a terrible shed around month 4 of being on rogaine and hoped it would recover. It never did like i had heard from so many others. I used to be on spiro too. It did not do anything either. I am now only on vitamins, nizoral and use clobetasal about every other day. Wash my hair every other day or every two days. Hairline still quickly disappearing.....

My derm definitely made me feel like FFA was sooo unusual in 30 somethings but I think it's much more common than it used to be. Kristen would you mind sharing your story...and maybe pics, too? :) :) you can inbox me if you like! I am also interested since we're around the same age.

Momto1, was the derm you saw at Duke by any chance?  I've had several calls from her office about participating in a study but am not sure if I want to bother with it. 

Winston Salem. NC

Oh, I know who you saw. I saw her for a 2nd opinion a few years ago. She confirmed the FFA diagnosis and offered some treatment options, but nothing I hadn't heard before. She's actually supposed to have a better bedside manner than the alopecia derm at Duke. I liked her okay but she was very careful not to go over the allotted time.

She is supposed to be a specialist in womens hair loss and barely looked at my hair! They alos forgot to take pics the first time I was there...she tooks pics this time. but you think she would do some measuring to be able to compare to next time. To think she's taking part in an FFA clinic and is a part of a support group blows my mind. I have lost so much hair in the last 5 years...I am ready to shake these doctors and say wake up! This is a problem! 

I saw so many young women at a festival recently who had hair loss issues...I mean girls in their 20's! Yes...I am probably too obsessed...but this is getting worse and I can bet that more will be done over the next 10-15 years.. Of course that will be too late for me.

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