Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 600
Latest Activity: Jul 8, 2023

Discussion Forum

Botox and FFA

Started by 2Dachshunds. Last reply by Shawnaynay Jul 8, 2023. 18 Replies

Hi Everyone: I remember there is a women on here who connected Botox to FFA. I was given the article, Frontal Alopecia after Repeated BotulinumToxin Type A Injections for Forehead Wrinkles:An Underestimated Entity?Antonino Di Pietro a Bianca Maria…Continue

Tags: Botox, FFA

Trying a new approach with CBD oil...

Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies

Hello All, I am venturing into new territory. It just dawned on me that a good experiment would be to try a medical grade CBD oil tincture on my hairline and see if it affects the redness. CBD is the nonpsychoactive part of marijuana that is being…Continue

Man with FFA. New member.

Started by Thomas. Last reply by Thomas Nov 23, 2022. 27 Replies

Hello,Thought I’d share my experience, as one of the few men with FFA, in the hope that it will be useful to others. It’s possible that the condition progresses and responds differently in men. I’m 40, live in London and otherwise healthy.I first…Continue

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by tcasal Nov 2, 2022. 1 Reply

Hope everyone is having a great weekend!I'm a freelance writer working on a story about alopecia. I need to find a dermatologist at major hospital or teaching institution to interview -- any suggestions?I've already reached to physicians at Duke,…Continue

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Comment by Rachel218 on August 6, 2015 at 7:43pm
LSE I will add that I've been using Rogaine for two months now and my hair has thinned out so badly it's so frustrating and terrifying but I am finally starting to see hairs growing in areas. Hope this keeps up and gets a lot thicker!! I feel your pain . I'm not much older than you. Just turned 30. Ugh ! It's so awful.
Comment by Classical Anne in NC mountains on August 6, 2015 at 12:05pm

To that I would add, better sooner than later with Rogaine.  I have been using it over a year on my brows, with the result that they thickened where they did exist, but never filled in the outer half, where it had become bald before I decided to try it.

Comment by Maddy, California, U.S. on August 6, 2015 at 11:06am

LSE, I have been using Rogaine for about two years now and it has definitely helped my eyebrows to regrow and it has thickened up the existing hair around my hairline. I don't know if it works for everyone, but it has worked for me. 

Comment by LittleSadEyes on August 5, 2015 at 9:03am

Anyone started using rogaine and noticed it made brows and hairline worse? Mine is receding day by day. 

Comment by DragonandFox on August 1, 2015 at 3:03pm

LSE, your story just gets me so worked up because I'm SO sick of some Dr's who are completely NON interested in helping patients.  You know what really got me going here is that yours is a Harvard Graduate.  I recently went to a GI Dr in my local area because my regular internist is too far away to get a endoscopy from and so I chose this Dr with Greenwich CT Hospital (really nice hospital) who has the pinnacle of education, Harvard Undergrad and Stanford U Med School.  She's a nice woman, but totally disengaged and no matter how many times I asked her what foods to eat or not eat for my stomach ulcer and colitis she repeatedly said food has nothing to do with either, it's only caused and aggravated by ibuprofen, advil, and anti inflammatory meds.  I had a RA Dr tell me the same thing as your Derm told you, "you "refuse" to take the anti inflams or the oral steroids so there's nothing we can do for you"  I "refused" to take any more meds form them because it was THOSE meds that caused a bleeding ulcer in my stomach!  What a mess!!  FFA is not so hard to diagnose really, if the hair follicles seem kind of red around them or are obviously red around them (along the hair line)...it's likely FFA.  Also, your Derm COULD take a Biopsy!  I mean honestly, I hate to say this but just the fact that you're so young is clearly a reason for him to have way more concern then, "oh well, sucks for you".

most definitely seek help elsewhere.  In fact keep searching for a Derm who knows what they're doing!!  You'll know that person when you find them.

Comment by April on July 22, 2015 at 8:57pm
I thought this post and all of the comments were really uplifting : ) https://www.facebook.com/humansofnewyork/posts/1032604000147033:0
Comment by Mike'sDeb on July 22, 2015 at 9:17am
I had an itchy front half of my scalp and red bumps in the front of my hairline(which I thought were from sweating while exercising). This was all before I noticed any hair loss. The hairloss itself was gradual and due to my hairstyle I did not notice it for a while. I actually thought the itching was from hair products. It has been a year now since my diagnosis and these issues stopped around the same time. My initial reason to see the dermatologist was to ask if there was something I could do for my thinning eyebrows. Dermatologist also measured my hairloss with pictures at each visit and so no change over the past year.
Comment by sadandunsure on July 21, 2015 at 11:59pm
What are you guys using to measure inflammation? My biopsy was taken a little further back than where my hairloss is at and said there was inflammation (also early androgenic alopecia) but my scalp wasn't red, itchy, sore, nor did I have bumps...I have none of those symptoms, but there is still inflammation under the skin (although there are a lot of articles saying inflammation is found iN AGA so maybe that's what it's related to). In any case, when You guys say inflammation, do you actuaLly have little bumps or something? Or tenderness/itching?
Comment by Mike'sDeb on July 21, 2015 at 6:41pm
Thank you both! By clean eating I mean no refined processed food. The nutritionist told me the majority of what you eat should either grow from the ground or have a mother. I occasionally indulge in my weakness for pizza but otherwise steer clear of breads, pastas etc. I found the more good things I ate and the better I felt the less I craved the "bad" stuff. I drink a lot of water and stay away from sugar and the unhealthy fats as well. I do have olive oil, avocados and other healthy fats. I eat pretty much the Mediterranean type diet. I walk 3-6 miles most days and I do a yoga class and a cardio class each once a week. It's all been positive changes and it seems to be working and I feel good about living a healthier lifestyle. As far as weight, I have always watched but I probably am at at the lower end of my range which is another positive thing! I don't feel hungry or deprived (I allow the occasional indulgence when it's worth it) so it's hard not to think these changes have been beneficial in the halting of FFA.
Comment by NatalieW on July 21, 2015 at 6:04pm

Mike'sDeb - that is wonderful news! and certainly gives us some hope that eating can affect this condition. I certainly notice that gluten affects the level of inflammation I have in the active area. Good luck and I sincerely hope that the "burn out" is permanent for you

 

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