Frontal Fibrosing Alopecia | My Symptoms, Diagnosis, Treatments

Thank you so much for creating this video Stephanie ❤

Thank you to share your journey, I have FFA and I feel so bad many time on my days, I want to feel I am not alone, and find some alternatives to hide the problem and feel confident again, sometimes I don't want to leave my house, because sometimes people are very cruel and they even laugh and that devastates me. Thank you for your testimony

Thank you so much for sharing. I am post menopausal and I really notice the receding hairline when I go to take a selfie photo. The fact that this is auto-immune based makes sense, plus stress and inflammation. I am tackling it with diet, supplements and herbs. ROSEMARY rinse on my hair and R oil to the affected area. The hairs are slowly regrowing on my temporal region. This experience has taught me to finally care for myself much more. I take care to get all the B vitamins and eat a lot of organic eggs for biotin. I eat chicken livers, and organic meat every week. I find B And B12 injections work better than tablets. Just sharing in case someone reading this might find it helpful. Good luck on your hair journey ❤ xxx P.S. I am SO GLAD you found another dermatologist 😅

Thanks for sharing your journey, Stephanie. I was diagnosed with FFA at my annual dermatology appt. by my PA-C, not a doctor, four days ago. I was very surprised by the diagnosis and that she knew from my symptoms and looking with a magnifying lens at my scalp what I had. I am very medically savvy as I have multiple, rare, chronic diseases that took years to over a decade to diagnose, but sometimes that causes me to not want to see a doctor for something that seems benign as my life is nothing but doctor appts. I chalked up my eyebrow thinning and itching and then the thinning of hair on one side of my hairline this summer (it started 5-6 months ago) to an allergy to my brow makeup and/or hair products and also going down on my estrogen. I also have hypothyroidism, but it has been under control for nearly two decades and causes diffuse hair loss with out itching. I have a lot of skin allergies, so I just kept removing products to find the culprit while this disease did more and more damage, unbeknownst to me. I would have seen my provider two months earlier, but she cancelled on me, and I am so upset as the FFA has spread since then. She told me at the appt. to use the mometasone ointment I have for my eczema (a strong, topical steroid) in my hairline nightly and to come back in 2 months. As the hair loss started to became noticeable to me on the other side of my head and above my forehead within the last month or two, I am not sure why we are waiting as it will likely progress like crazy in two months if only on a topical ointment. Unfortunately, I was totally clueless while in the exam room and every dermatology provider is booked for 3 months. Right now, my hair loss is not horrible noticeable (I have very thick, curly hair) except on the right side of my hairline and in my itchy, dark brows which are so drawn on now it's ridiculous. I don't want to lose more hair as mine is dark like yours (well, it's dyed now as I'm nearly 50) and I have light-olive skin, which makes it more obvious than in those with light hair and light skin. Since researching things, I feel like my provider should have started me on more meds and treatments right away, but many of them give me terrible side-effects so I'm worried if I'll be able to take anything aside from topical and injected steroids, although steroids give me adverse effects at high doses. It seems like a no-win situation. The other thing is when this started in my brows maybe 6 months ago, I developed these odd, white bumps all over my face. Some look the same and some are a little different looking, but they are all white although some have dilated capillaries around them (possibly due to my rosacea and telangiectasia). They are larger and more obvious on my cheeks. I have been told twice now that they are sebaceous hyperplasia and have been using a glycolic acid product by Neutrogena which has helped some with flattening them, but not much else, and it's terribly drying as I'm purposely overusing it. These bumps are definitely some kind of papule as I went into research mode after getting the FFA diagnosis. My provider didn't mention any connection between the bumps and FFA, saying the former are common and hard to treat, but I found several research articles in medical journals establishing a link between facial papules (FP) and FFA. I 100% believe the two are related due to the timing, but it seems Accutane is the best treatment for these bumps and I could never tolerate it with my dry, rosacea skin and painful, severe dry eyes. I also have double corneal transplants due to keratoconus and rely on scleral contact lenses to see, so Accutane is just too risky for me due to increased ocular dryness and possible corneal scarring, even if I cared to suffer though it for months on end. I don't know which is worse: the growing band of hair loss or these white bumps all over my face. I find it hard to believe I have yet another rare disease, but cannot find a connection (yet) to my genetic connective tissue disorder called Ehlers-Danlos syndrome, classical type, which is the cause of 99% of everything that is wrong with me and became highly symptomatic 21 years ago. Anyway, I really appreciate hearing from someone so young with this condition as you apparently don't fit the norm. I wish you well and hope your own journey can come to an end soon, but I'm under the impression this is a chronic condition requiring medication for life unless it spontaneously resolves itself. I could barely see your FFA from the front and I do think yours is easier to hide due to your straight hair which is nice. My hair grows up and out without tons of blow drying and flat ironing so it doesn't lay, period!

I'm 34 and I've had symptoms for years. It's hell trying to deal with these dermatologists. You'd think they'd have a more surefire way of diagnosing one condition over the other. Instead they send us on a merry go round of wrong diagnoses "guesses" while we lose more hair. It cannot be that hard, this is your job. So frustrating. Anyway, nothing has worked to stop my hair loss or regrow it yet. I'm really hoping it doesn't get much worse. It's an out of control feeling like there's nothing you can do to stop it and it's permanent. Mine is thinning all along my entire hairline but I have actual bald areas right at the top of my hair line. I wish there was something we could do.

It is so lovely to see your journey and to talk about it so calmly. I have just been diagnosed with FFA and this is the only thing I have watched that has made me feel hopeful :) Thank you Stephanie :)

Hi Stephanie, I also have FFA, thank you for sharing your experience and being so postive and practical. 🙏❤️

Thank you for sharing this. It is so appreciated. I just went to my dermatologist for my annual skin checkup this week when he diagnosed me with FFA. He put me on oral rogain and suggested steroid injections. I was so shocked by the diagnosis that I didn’t really consent to the steroid injections right then and there so I am going to go back and give that a try.

Loving your video quality, Stephanie!!! I had no idea you were so good at this. Especially the details in your description. I may have to get some tips from you. Awesome video!!! 😊

Thank you for sharing your experience- I also was misdiagnosed by many dermatologists and other doctors. Spent years and $ going to other doctors. Thank you for sharing your experience. It helps.

GOD BLESS YOU! THANKS FOR YOUR VIDEO! I AM HAVING THE SAME SITUATION!

Thank you! Just got diagnosed. It's disheartening, but I will start my treatments tomorrow with hope it will help.

Thank you for this video, I have this but have never had a diagnosis. Now I understand the condition

Thanks for sharing your history, you are awesome, this video will help other people and I find u brave!! Hope u are doing great in 2023!! 🙂

I just came home from seeing my hair doctor. This doctor injected R2 Rapid Recovery Hair Restoration into my scalp a few months ago. I saw some results but is not that much that I do it again and he did not suggest it either, the cost was $4200. Today he convinced me that it is for sure frontal fibrosing alopecia. Finally, after ten years I have a correct diagnosis. He also said a hair implant is not an option for me. I am going to continue with Laser and Rogain therapy at this point. I liked your video a lot. maybe in future hair implant become

This was a great video and helpful sharing your journey. Thank you

Thank you! You are so brave! I have this problem too, I’m losing hair every day and my forehead looks bigger now 😢

This is a condition that was considered rare and now is becoming epidemic. Slow diagnosis and uninformed doctors are not helpful in slowing down progression. We need more research to find a solution as its impact is significant on people's quality of life.

I've read it might be related to salicylate intolerance. And microneedling makes it worse for some reason. God bless, and I pray you recover your hair. Thanks for sharing.

I have this same issue, and I had to go to 3 dermatologists before someone properly diagnosed it and took the proper steps to slow it down. It is amazing how much doctors DON'T know!!!!