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Frontal Fibrosing Alopecia
Information
This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.
Location: Dubai UAE
Members: 601
Latest Activity: Jul 8, 2023
Discussion Forum
Botox and FFA
Started by 2Dachshunds. Last reply by Shawnaynay Jul 8, 2023. 18 Replies 0 Likes
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
Trying a new approach with CBD oil...
Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies 0 Likes
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 4 Likes
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 0 Likes
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
Comment Wall
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Comment by Ann on November 7, 2013 at 8:42pm
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Hello Everyone, I saw a new dermatologist last night. Thankfully, she trained with an expert on scarring alopecia, so she was extremely informative. However, she told me after looking at my scalp that I have both FFA and LPP. Of course I do. Doesn't that beat all! I explained that in September my scalp became extremely inflamed and when it finally calmed down I had lost patches of hair. She told me to call her immediately if that happens again so that she can do injections to reduce the inflammation as quickly as possible.
So, I just restarted hydroxychloroquine, she gave me injections last night, and I continue to use clobetasol solution and shampoo.
I am attending a seminar on Sunday. Will let you all know if I learn any more than we already know.
ann
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Comment by Mandy on November 7, 2013 at 3:58pm
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I have read so many things in the group and I can only say who amazing you all are... Sharing stories, feeling, thoughts and treatments... All of this has helped me put things into prospective... Feeling stronger now... Know I will have my bad days but I have a great family and friends and now the group to help me through the tough times :0)
Celia, I have watched the link... Very interesting! I have been doing some research into autoimmune disorders and leaky gut... Made some changes to my diet and trying some different supplements... Will keep you posted.
On the bright side have lost 10 pounds and everyone is telling I look great and my skin has a glow lol x
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Comment by Caro UK on November 7, 2013 at 7:54am
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Polly, you went through an awful time with a combination of events and serious ill health on top of it all. As you rightly say, the stress you suffered during those years seems likely to have been the trigger for developing FFA. Thank you for sharing this with us. I'm glad you've been able to come out of that dark period in your life and enjoy life once again. This disease definitely seems to be related to stress, and also linked with ill health when the immune system becomes damaged.
Some years ago I developed IBS and was prescribed medication to alleviate the symptoms. At the time my GP did not give me any dietary advice but I am definitely gluten intolerant as I have a flare up if I eat anything containing gluten. If I pay attention to my diet I do not need to take any medication.
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Comment by Celia on November 7, 2013 at 4:44am
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Ooooooops - blond moment ! http://youtu.be/0lLeXr9J93Q this is the link and it's about reversing your autoimmune disorder......... x
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Thank you Celia x
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Comment by Annie on November 6, 2013 at 1:00pm
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I agree that the severity of this disease is stress-related. My scalp was calm at my July visit with my doctor, then a death in the family caused a painful flareup in early September. My scalp is just beginning to calm down two months later. All the drugs in the world can't combat stress, but my doctor did say that he thought the flareup would have been much worse if I hadn't been taking Plaquenil. He also told me to call him immediately if I have another flareup so he could prescribe short term steroids to shorten the severity and duration.
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Hi Mandy - just type in Treatment for FFA, it is the 5th article and there is a box on it with blue writing on - FFA - hope you find it. x
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Hi Celia, can find one that runs for about three minutes and is just a lady talking... Do you have the link? X
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I have just looked into Treatment for FFA on the internet - there was an interesting youtube video (8 mins) that may be worth watching - (cancel the ad at the beginning !)
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I agree ladies... My head can look perfectly normal when I get up but I have late checked it a work and it is bright red again... My job can be very stressful and busy... But we all need to pay the bills! I am looking into work four days and that would then give me a long weekend :0)
I'm also taking aconite as they believe the RTA I was involved in 10 years ago could be the root cause??!
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