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: 17 hours ago

Discussion Forum

Hair Toppers

Started by Leni. Last reply by Lang Bozic May 22. 10 Replies

I am interested in getting a topper but don't know where to go for one. Having one of those weeks when the hair keeps falling and I am not feeling very comfortable. I don't want to spend a lot of money. Thinking of ordering off the internet. Please…Continue

Get Ahead of Hairloss Event plus new information on FFA

Started by Liz. Last reply by Carol Aug 7, 2025. 11 Replies

Hi I don't post on here much so I may well be giving information which you might have been discussing already. Are any of you in the UK going to the Get Ahead of Hairloss event in London at the end of September? It has been organised by Dr Wong who…Continue

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

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Comment by KarenGinny - Iowa, US on February 27, 2014 at 11:18am

MJ,  I live in the US in Iowa and would love to go to a conference like that, but don't think I could afford it right now. Even if I could make the 8-10 hour drive, the hotel and conference fee would cost a lot.  You could maybe go to the carfintl.org website and see if there is a way to send a message with your questions.   I am currently seeing a new dermatologist and taking Methotrexate to help calm down my itchy dry scalp. It might be helping but too soon to really know. My hair loss right now seems to be stopped - has been for a while now, but still have the irritated itchy extremely dry scalp and no new hair growth. I just do my best to cover up the bald areas.   On the topic of c-sections, I was not born c-section, but my two sons were. I've read about leaky-gut syndrome and how it can affect children/adults with autism. I have a 14 yr old son who has autism, but he doesn't really have any digestive issues, other than being a very picky eater. I also have a 12 yr old son who is neuro-typical.   Sometimes I wonder if my auto-immune issues have anything to do with his autism, but don't think I'll ever be able to answer that question?? 

Comment by Paula uk on February 27, 2014 at 11:14am
Hi All,
No,I was not born by C-section nor have I taken a lot of antibiotics in childhood or as an adult. I have taken more medication in the last 18 months than I had up to the age of 48 !
P x
Comment by Rita - Canada on February 27, 2014 at 10:09am

I too, have not been born by C section nor have had any digestive issues to date.

Comment by MJ on February 27, 2014 at 9:25am
I would like to find out if any one is attending the CARF conference. I wonder if there is a way to submit questions even if we are not attending.
Comment by Debs on February 27, 2014 at 7:36am
Hi ladies thank you for answering my question.

I was also given antiobiotics as an infant for pneomonia so this would gave added to the problem and I have read about leaky gut. Clearly when we take part in research the derms need to go back to our infancy to get the whole picture.
Comment by Celia on February 27, 2014 at 7:30am

I would probably endorse the anti-biotic theory. Oddly enough, some of us have been prescribed these in the cocktail of drugs we are taking. I am beginning to wonder whether the 'cocktail' probably exacerbates the condition, although I understand some of us feel the condition is better since being on the drugs.  The question which the derms cannot answer, of course, is whether the drugs have helped or whether the condition would have improved anyway.  What a conundrum ! x

Comment by MJ on February 27, 2014 at 7:08am
Debs, I wasn't born by C Section either, but what you are talking about sounds alot like leaky gut syndrome,which is an over abundance of bad bacteria. I started reading about it when I was first diagnosed, as I have had gastrointestinal issues for years. Probably from a lifetime of eating wrong. I believe overuse of antibiotics can cause the condition as well.
MJ
Comment by Jules UK on February 27, 2014 at 5:51am
Hi Debs, I wasn't born by C section but my daughter was and she suffers from numerous allergies. I'd never made that connection.
Liz, is your hair still growing back? I do hope so! X
Comment by Celia on February 27, 2014 at 5:50am

Hi Liz - are you joining us on the 22nd. Celia

Comment by Liz on February 27, 2014 at 5:28am

Hi Debs. I wasn't born by C Section and neither was my mum x

 

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