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: 452
Latest Activity: 3 hours ago

Discussion Forum

Just diagnosed with FFA

Started by Donna. Last reply by Lo 3 hours ago. 31 Replies

I have been losing hair for about a year I’m guessing. This last spring is when I noticed my sides at the temples were receded far back than I had ever noticed, can’t put the sunglasses on my head without making sure to pull some hair over back…Continue

Results of Research at Guys Hospital for FFA, any results??

Started by Marytee. Last reply by Airam-FFA yesterday. 2 Replies

Hello EveryoneI saw my Consultant last week, she said that the dermatology community were looking forward to the FFA results at Guys as something has been found. She didn't know any detail as yetDoes anyone know how the results will be…Continue

Microblading

Started by Minter. Last reply by Minter Oct 10. 7 Replies

I got my brows microbladed the other day, they are SO DARK! Very pleased with the shape and I know the first few days they darken up so much, but still it catches me off guard when I glance in the mirror- next phase is the flaking/scabbing where…Continue

Tags: eyebrows, microblading

Update from me

Started by Halfbakedwho. Last reply by Airam-FFA Oct 9. 17 Replies

Hi everyone. Well, it's been a little while, thank you all for your supportive comments, and thank you Sally for your lovely blog post.So - here's what is happening - I have been absent b/c we just moved, and I am living in two towns (my work is…Continue

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Comment by illustr8r yesterday
Late night musings: Hubby and I are working our way through ‘That 70’s Show’ ( haha! Don’t ask why!!) Season 5, Kitty (the Mom) thinks she is pregnant but is actually has entered menopause. Red and Eric ( Father and son) awkwardly contemplate what ‘menopause’ means for Kitty. Eric says, “Will she lose her hair?” Red says, “No she won’t go bald!!!”

I say, “Well, maybe she could.”

I looked over at my hubby-he looked at me. *sigh*

***

I wonder if there is a Hollywood movie star out there who has FFA and has been hiding her condition under wigs and toppers? FFA needs a high profile advocate to represent the condition-bringing in more funding for research and awareness.

Maybe.
Comment by Halfbakedwho on October 8, 2017 at 2:02am
Well to be honest, I just end up cheating, maybe a few times a week. When I am starving and on the road, there's nothing to eat without gluten and dairy. I try to avoid one or the other in that case (sandwich without cheese, or salad without croutons/bread). But sometimes I just say f*** it (excuse my French lol) and eat what's there. Life is too damn complicated anyway. And for the most part, when I have what I need at home, I stick to plan. Good enough is good enough...
Comment by AnnieMay on October 7, 2017 at 10:27pm

Illustra8r- I live in Oregon and I've tried to find gluten free bread that I like and it is SO hard. Trader Joes gluten free bread is ok if you toast it. Bread is hard but cheese and pasta are rough for me. I tired some gluten free pasta and it was awful. If I could have put cheese on it it would have been better but oh yes I can't have cheese on my pasta either? What am I supposed to eat?? Ughhh

Comment by illustr8r on October 7, 2017 at 9:40pm
@HBW and @AnnieMay I cannot imagine living in France and not eating pastries and bread. Oof! Torture!!! I’m hungry all of the time too. I used to leave food on my plate but now I practically lick it clean LOL!

I miss my morning baked goods the most...
Comment by Halfbakedwho on October 6, 2017 at 4:29pm
I have not been so good with my version of gluten-free dairy-free. Living in France makes the bread thing damn hard. For years and years I woke up to nice fresh bakery bread with my coffee. Now buying gluten-free stuff or eating gluten-free cereal. Bleh. But I notice when I slip my dry mouth comes back. It had left me alone all summer, when I mostly stuck to plan.
Comment by AnnieMay on October 5, 2017 at 11:10am

I started the Paleo diet two weeks ago and I'm on vacation now and even Paleo is tough especially in restaurants. Bread is the hardest for me. And I feel like I'm always hungry! The good news is that the itching for me is much better.

 

Comment by illustr8r on October 4, 2017 at 1:53am
I went off the AIP Diet while on vacation. I tried to stick to it the best I could but eating out is a toughie-I hate being that person who wants everything on the side and inquires how the chef cooks things. I’ve had eggs and coffee for breakfast. A few salads had cheese that I forgot to ask about leaving off so I’ve had some dairy. I’ve not had any grains or gluten. Guess what? I’m itchy! I also have red dots in my widows peak and on my left side. My skin has gotten bumpy where it looks sun damaged. So, when I get home it’s back to strict AIP eating. Since I didn’t proper reintroduce suspect foods I don’t know which things have triggered a response...*sigh*
Comment by Ana_Brazil on September 22, 2017 at 1:14pm

Hello!

I got connected with a group in San Franciso, from a recommendation from someone here, that I cannot find since I don't know how to go around the site very well. I highly recommend the site and newsletter very informative, encouraging and empowering. I am supporting them!

http://www.carfintl.org/

Best!

Ana

Comment by Jules Australia on September 22, 2017 at 6:35am

AnnieMay I hear you loud & clear & totally relate to your feelings.....i have always been a fairly positive person with a 'live in the moment type attitude', & even though i try really hard to keep up that approach, it simply can at times be such a struggle to achieve. Especially with relentless scalp dysesthesia; it's a gaunting reminder of whats likely to come (more loss & adjustment).... but at the same time we have to try view life by looking at 'the big picture' .....i know its easier to say than do.....but we all only get one chance on this earth.......& somehow have to find a way to cope with this horrible disorder & the challenges it throws at us... i'm thinking of you AnnieMay as i understand your struggle....if i could give you a hug right now i would....it sounds like you have a loving family (as i have also), which is pretty special, a lot more than many have.....if its any consolation it helps me sometimes when i think of my friend (from high school) who died 9 years ago,at 50, from matestatic breast cancer (a long 6 year battle), how strong & brave she was all the way through...and the fact that she never got to see her two young boys (7 & 10 at the time) grow up..... i am not at all religious, but i love  & have a huge respect for nature & the world around us in general.....having said all that i totally get how this disorder can bring you down.....but we r all here to support each other....i have a busy time helping my Mum move over next week, bu t will check back in in few days time to see how you're doing Annie. By the way, what country are you from..... i live west of Brisbane in Queensland, Australia, am 59 in a few weeks.....be kind to yourself...you deserve it!!!!!

http://www.realestate.com.au/rent/between-0-325-in-brassall%2c+qld+...

Comment by AnnieMay on September 22, 2017 at 12:07am

To all: Honestly just being able to vent about things that no one would ever be able to understand unless they are waking up every morning dealing with the realities of this "shitty" condition helps so much. It's so hard (impossible) to explain to anyone why this is so all consuming and so devastating. It sounds superficial but it is so much more than hair loss. I wish I could forget about it but the scalp sensations and skin issues for me are such a reminder everyday. And as a smart woman to not have any clear direction on any way to help or move forward in any way is just beyond depressing. .. . the thought of wearing a wig to my daughters wedding someday makes me cry and keeps me up at night. I have always been such a strong woman but I have no idea how I could ever get through something like that. I thought I was strong but this is testing me in ways I never knew. I wish I had some positive reaffirming things to say but I'm having a bad day/bad week. Not sure what I would do without all of you. . . huge hugs to all of you

 

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