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: 599
Latest Activity: Jul 25

Discussion Forum

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by LauraLGiraldo Jul 25. 2 Replies

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

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by DragonandFox Jul 22. 11 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

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

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Comment by Anne Louise on August 18, 2014 at 10:59pm
April congratulations on your pregnancy! I believe it was you who were hesitant to get pregnant because of FFA. Now you have something joyful to focus on!

I was away at the beach last week and spent many hours riding the waves. I kept thinking I might as well enjoy this summer because I will probably be self conscious next summer with less of a hairline! Last summer I was penciling in my eyebrows and didn't get my head wet, but with the tattoos I was maintenance free! So who knows what the future will bring. I find I am more joyful when I focus on the blessings of the present moment.
Comment by April on August 16, 2014 at 10:19pm
Thanks Linda!
Comment by Linda from Cincy on August 16, 2014 at 8:14pm

Congrats, April, on your pregnancy, your skin changes already demonstrate how hormones affect our skin . . . and our hair.  Your skin problems definitely sound like rosacea even though you weren't officially diagnosed.

I agree with Alice that while you're expecting you should steer clear of any attempts to affect your hormonal levels.   That's why women of childbearing ages are told to stay away from Propecia and Avodart.  Mother Nature will probably provide you with all the good hormones you need in coming months.  Take care.

Comment by April on August 16, 2014 at 8:12pm
Alice, yes I wouldn't try that now! There isn't much I can do for the FFA right now. Just hoping it doesn't get too much worse
Comment by Linda from Cincy on August 16, 2014 at 8:04pm

Jean, I am not really fair-skinned either. . .more a light olive (I have some Spanish blood) but also have a little Irish and English in me.  I forgot that I also had psoriasis as a kid (ankle and knee) but it cleared up when I entered into adolescence. 

I've have had my eyebrows tatooed also earlier this year and am happy with them.  But not happy with the two different derms I went to over the year and a half period when they were disappearing.   Neither derm connected that hair loss to FFA or even mentioned the possibility.  

Alice, I may look into spearmint tea as I am really nervous about stronger drugs altho' they're tempting because they have worked for some fortunate individuals. But at what long-term cost I'm not sure.  I'm sure I'll calm down and reach the point where I am not so obsessive. But until then. . .

Comment by Alice on August 16, 2014 at 6:47pm

April, I would be very cautious about spearmint when you are pregnant. It's great that your skin has clesred up tho. Congrats!

Comment by April on August 16, 2014 at 5:21pm
Linda from Cincy, I also have skin problems on my face as well as FFA. I break out in bumps and pimples on my face as well as experience flushing. Doctors have never given me a clear diagnosis but I think it is completely related to hormones as I am now about 5 weeks pregnant and my skin issues have pretty much completely cleared up! I am hoping the same for the FFA but so far my scalp is still somewhat itchy and irritated. I've also read some studies that show spearmint tea can reduce androgens. May be worth a try!
Comment by Alice on August 16, 2014 at 3:29pm

Linda, if you are interested in antiandrogens but leery of drugs, you might want to look into spearmint, either tea or capsulesi think it may be helping me.

Comment by Jean on August 16, 2014 at 11:48am

HI Clincy

I have mild rosacea and also psoriasis (hands and feet).  Although I am not fair skinned, I had Irish grandparents.  I think we are all frantically searching for links in the hope that we can come up with some form of comonality in order to combat FFA.  I'm trying not to let the disease rule my life and have had my eyebrows tatooed and just got a wig!

Regards to everyone

Jean

x

Comment by Linda from Cincy on August 16, 2014 at 11:17am

. . . also interesting that FFA seems to burn out when it reaches the area of the scalp where the hair follicles are not as sensitive to androgens as the frontal areas (receding hairline) are.

 

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