Frontal Fibrosing Alopecia (FFA): Diagnosis & Treatment

I have been diagnosed with this condition and it has driven me into a deep depression, I want to take my life. There is no hope.

I am 43 and was diagnosed with FFA in 2013, after many years of unexplained hair loss. For the past 3 years, it has become extremely aggressive, even with the daily use of clobatisol foam. In 2013 the dermatologist took a piece of my scalp and sent it off to a "specialty lab" as I was told. As a woman, it's depressing to lose your hair. Society tends to accept it more in men than women. I'm shocked with the cost of wigs and how many insurances don't cover them as well as don't think of them as medically necessary. I live in NY and am very shocked that there are not any doctors researching this but instead throw you a script to be on your way. Thank you for this video. It's very very informative. I have multiple autoimmune diseases and experienced much trauma as well.

I first noticed symptoms after a some emotional trauma. For two weeks following the incident my body had felt like it had been in some type of accident. I was extremely fatigued and exhausted. First, I started losing my eyelashes then my brows. I shared this with family, nobody took it seriously. I’m not quite sure how long after but I noticed my hairline moving back, as a woman this was quite scary to me. Fortunately, my dermatologist was savvy and ordered blood tests and a biopsy right away. I was diagnosed with FFA, shortly after. I’ve been dealing with this auto immune disease for over a year now and can get it in remission. The disease has become pretty aggressive and it’s so depressing. They say stress triggers it. My dermatologist moved to Texas and my new Dr. wants me to take Hydroxychloroquine (I think) and I don’t feel comfortable taking that . Anyway, I’m happy to have found more info in this, I don’t feel so alone.

I finally got a diagnosis as to why I was losing my hair: FFA... It makes me mad that more than one physician 'pooh poohed' me...treated me like it was 'much ado about nothing'...blamed it on aging. It wasn't until I was referred to a dermatologist for another condition that I finally got a diagnosis. I"ve lost half of my eyebrows and between a half and one inch of my front hairline. It didn't happen over night either...the real kicker is that I had the same experience with breast cancer..another delayed diagnosis b/c the doctor blew me off..That was 30 years ago.. I'm here by the grace of God and being my own advocate. I can't help but wonder if the neglect is being driven by the bottom line, which is more important than the patient that is being treated.

I am a 33 year old female and I just got confirmation of FFA from a scalp biopsy. I've always had fine eyebrow hair and I lost my eyebrows 10 years ago. Thankfully I have a good person who micro blades them, but other symptoms were texturing of the skin on forehead and changes in the hairline. I am doing as much research as possible before treatment. Results confirmed " mild nonspecific chronic inflammation" of the scalp. No redness only dry/scaly skin. Thank you Donovan for these informative videos, an updated one would be greatly appreciated.

I don’t know what to tell you or how I can thank you for all those great info you are the best

Very comprehensive lecture Thanks for the video

I am 51 was also just diagnosed with FFA a month ago, it became very very aggressive in the last 3 years to the point I can tell the difference every time I get a shower. and also when mother nature started to go south in 2017, had to have a hysterectomy in 2020, I also have hypothyroidism (2011) , So I am triple cursed !!! LOL I am very pleased to hear this from a fellow Canadian !! I didn't want to believe that this was not reversible, but your explanation Donovan has finally hit home, I just wish it would hurry and stop falling out. Thank you very much for this

You have explained to me exactly what my conditiomn is waiting long time for dermatologist appt; thank you.🙂

I think this may be what is causing my hair loss! It's kind of a relief. I have other autoimmune diseases as well. Thank you for this informative video!

Thank you...

Thank you - I am a sufferer in the Uk - thanks to my consultant it was identified. I hope you continue to research this disease. Bit distressed to learn of impact on my skin potentially Thank you though - very informative.

I have had FFA for 26 years (it was not diagnosed as such at the time). My hairline recession has been a lot slower than I anticipated but I'm now at the stage where I'd be happy to shave my head as it looks so terrible. Mine started with loss of hair from my limbs. Eyebrow loss has been a late development. At the same time I was diagnosed with Hashimotos disease and I react to spring sunshine and have hay fever. Mine all kicked off around age 40 (perimenopausal). I understand its a LOT more common now than it was 26 years ago!

Thank you Dr. Donovan for posting this very informative and well explained video. I haven’t been officially diagnosed with FFA, but I know I have it. I first started losing some of my eyebrow hair and then my sideburns are basically non existent and I have facial papules. I joined the UK FFA alopecia forum and to my surprise, I noticed that many women, including me have facial sweating and debilitating hot flushes. I have hypothyroid Hashimotos and also Primary Biliary Cholangitis. Both autoimmune diseases and I’m afraid to take any medications due to that autoimmune liver disease. Thank you for studying and addressing the dermatologists’ community about the FFA. I will be seeing a dermatologist in 2 weeks at USC Hospital in Los Angeles. Hope I can start with a treatment that is somewhat friendly to my liver. Thank you Dr. Donovan!

Thank you for this very informative video. I was just diagnosed with FFA. My biopsy is in a month. After seeing your video I know that's what I have. (My doctor also asked me if I wanted the biopsy as an option) I think I should just forgo the biopsy and get right into treatment. Thank you, Jean Rodriguez

This is a great lecture. I was recently diagnosed with lichen planopilaris, I have diffuse hair loss that seems to appear as androgenetic alopecia but with a chronically red scalp and pain when my hair moves around. These autoimmune diseases are very interesting.

I'm 32 and I just was diagnosed with FFA. I started to lose my hair about 10 months ago and BEFORE that (around 5 months earlier) I started to use SPF cream like CRAZY (4-5 times per day cause of sunny climate) and some of cream I've been putting occasionally on my hairline area time to time. And I wander did anyone else mention the same coincidence with using SPF cream and ended up with FFA?? Thank you for this video and your work, I hope you'll find a treatment soon!! This disease appeared out of nowhere and it's gonna literally ruin my entire life..

Here's what I can say. Pre-2012, I was fine and had a remarkable hairline. After purchasing my home in 2013, I noticed a minor hair loss. Gradually, my beard and mustache area started to go first and the outside of my eyebrows. Then the sides of my head. I know for a fact. Pre 2012, I never used sunscreen. After 2012, I did because I worked in the oilfield. Not saying that it was the sunscreen. Heck, I could have picked it up in the oilfield. I also looked at old family photos and saw that one aunt seemed as though she had FFA. I have never plucked my eyebrows either. There is a limited amount of research on FFA, but the cases are growing.

And....I have all the bodily hair losses, arms, legs, under arms and pubic, but it did start with my eyebrows, I just wish the dermatologist I went to when it started knew about this or thought of it, she just told me to condition, condition, condition and gave me a prescription for minoxidil

Thanks for the information. I was diagnosed with FFA year. I noticed my hair falling out and the edges of my hair balding. In less than a month I lost my hair which became see through thin and continued to pop and shed. I noticed some growth without taking shots but I do take nutrafol. I have arthritis and I do sweat in my forehead alot. Thanks again.