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: 601
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 Anne Louise on October 19, 2014 at 8:05am
Hi Murphy welcome to our group and I am sorry to hear of your diagnosis. I just turned 47 yesterday and was diagnosed earlier this year. You will find tons of information and support here. You may want to consider getting your eyebrows tattooed. I have a post about it in the discussion forum above.
Comment by Murphy on October 18, 2014 at 8:25pm
Hi everyone. I'm new to the group. I'm 47 and was diagnosed with FFA a few weeks ago. Similar story, lost my eyebrows, receding thinning hair, loss of hair on upper arms and legs. I saw four doctors before being diagnosed and was relieved to finally have an answer. After a year of intense itching and burning of my scalp and body, I felt like I was going crazy!! So, I'm just starting to read through the posts. I used clobetisol, but got painful bumps on my scalp. I started a serious detox today (master cleanse) I did this several years ago and had relief of joint pain. I'm deeply concerned about my appearance and have difficulty styling my hair. I was wearing bangs to hide the fact that my eyebrows are gone but now the bangs are sparce! It will take me some time to read the posts but so relieved to have found this group!!
Comment by claire on October 18, 2014 at 12:13pm
I hope that the get together went well this week. I have not been writing recently as I feel really fed up at the moment as my hair is now going around my ears. My dermatologist is recommending Mycophenylate mofetil. It has side effects and just wondered if anyone had any experience of taking this medication?
Comment by Celia on October 15, 2014 at 1:18pm

Meme - I am so sorry !  That's very thoughtful of you to consider us.  I do hope you feel better soon.  Will let you know how our day goes.  Hope to see you early in the New Year ! x

Comment by Anne Louise on October 15, 2014 at 10:39am
I am going to a nursing conference on managing chronic inflammation with nutritional interventions this Friday. I will be sure to share anything that may be of interest to all of us here.
Comment by MJ on October 15, 2014 at 7:15am
Rita, I started by reading Dr.Weil as suggested by Debs here. I read all of his books and follow his website. He was the base, but then I kept reading others and decided to remove the gluten and dairy as well. I kept the eggs in, but only eat antibiotic free and range free. I eat lots of other grains, like brown rice and quinoa and legumes, which paleo and alot of other diets restrict. I now will cheat on things when eating out or on occasion. So, I sort of do my own combo of things, limiting added sugars, processed foods as much as possible. Also, lots of green smoothies in my Nutibullet. I may have mentioned in a past post that I literally was spring allergy free for the first time in forty years, without using any meds. Sorry to get long winded!
MJ
Comment by Debs on October 15, 2014 at 7:09am
Rita, Dr Joel Fuhrman and Dr Andrew Weil both have websites with anti-inflammatory diet explained in detail. The basics are GBOMBS this is greens beans onions(alluim family) mushrooms berries seeds(omega 3 seeds/nuts)

Both of these Drs have very easy food pyramids to follow. You can have an egg and a little omega 3 fish a couple of times a week. Grains are limited too. The emphasis is on veggies.
Comment by Meme on October 15, 2014 at 4:33am

Hello C

I am so sorry it doesn’t look like I will be able to come to yours on Thursday. I have been in bed for the past 2 days with a vomiting virus and although I am feeling better I certainly do not wish to pass it on to you and the ladies. I also do not feel up to the drive. I apologise for letting you down as I know you will have gone to a lot of effort. I am also upset as I did find the get together last time a real boost to my self-esteem, just being able to see and talk with you all.

Have a lovely day, sorry again

 

Meme x  

Comment by Rita - Canada on October 14, 2014 at 4:25pm

Hi MJ, I am curious if eggs are allowed on your anti inflammatory diet as they are on the Paleo diet and what is the name of the one you are following?  I came across another anti inflammatory diet- Dr.David Perlmutter,neurologist. It does get confusing as to what is considered to contribute to inflammation.  The rest of the foods mentioned by Annie would be the same pretty much. Thanks.

Comment by MJ on October 14, 2014 at 3:58pm
Annie, I too have followed an anti inflammatory diet. I was really strict for about six months, literally logging in a notebook everything I ate. I was a changed person. Never felt better in my life. That honestly helped me deal with the FFA. I am still pretty good, but not as rigid. Really hard with a busy schedule and fanily. My hairloss has not been too bad since diagnosis last December. Keep it up if you can. mJ?
 

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