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: 602
Latest Activity: Nov 25, 2024

Discussion Forum

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by lordiron Nov 25, 2024. 10 Replies

Hello!I was wondering if anyone has been tested for food allergies to determine if a particular food is causing inflammation, which in turn could exacerbate FFA. I had the skin test a couple of years ago at an allergy clinic, and it came back…Continue

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14, 2024. 32 Replies

CARF 2018 Conference Notes:First of all, I am so glad I went to the CARF Conference! It was worth every dime I spent – a true investment in myself, but hopefully I can bless and encourage others from what I learned.The CARF staff and volunteers are…Continue

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

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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?
Comment by Celia on October 14, 2014 at 12:44pm

Message for Mary from Amersham - I just saw that you have joined our merry band - welcome !  You are very close to where I live and we are having a get together near Beaconsfield this Thursday - you are very welcome to join us ! If you can figure out how - send me your e mail as a message on this site - into my inbox and I'll give you directions if you would like to come on Thurs.

Comment by Annie on October 14, 2014 at 10:56am

Hi all, I wanted to let you know about my latest endeavor to try to lessen the inflammation caused by my ffa.  I saw a lecture regarding inflammation / weight loss on a PBS station with nutrition specialist JJ Virgin.  On her diet plan you take 7 high inflammatory  foods out of your diet for 3 weeks (dairy, gluten, corn, sugar & artificial sweeteners, soy, peanuts, & eggs) then start adding them back into your diet one at a time to try to figure out which ones are causing problems.  I've been taking plaquenil for over a year, and it has helped, but it has not slowed down my fffa symptoms as much as I like.  Anyway, I decided to try JJ Virgin's diet plan.  After all, I can do anything for three weeks.  I started to tell a difference in my joint aches & pains after only three days.  Two weeks into the diet I could see that my scalp was less pink in the areas affected by the ffa.  I think it's probably too early see any difference in the hairloss, but I'm encouraged.  Today is my 21st day on the diet.  I honestly feel better, plus I've lost 7 pounds!  I have my 6 month appointment with my doctor next week, so I'll let you know if he notices any improvement in my ffa.

 

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