Frontal Fibrosing Alopecia

Information

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

Comment Wall

Comment

You need to be a member of Frontal Fibrosing Alopecia to add comments!

Comment by Lauren on November 15, 2015 at 2:20pm
Steph, thanks for your comment back. It is always on my mind too to the point of obsession. It started before I was diagnosed and after diagnosis was able to put it out of my mind for a bit with the thought that there isn't anything I can really do to change it so just accept it. But I'm back to obsessing thinking it looks like I've lost a bit more right around the biopsy area. I think being single is what makes me worry more. It's nice to hear Steph, that your partner is supportive. My family says it's not noticeable but I constantly worry that it will get worse and then what if i look worse and can't find someone, yada yada. I know it's stupid, and I shouldn't worry. Any suggestions or advice from anyone?
Comment by Marilyn on November 15, 2015 at 11:42am

I'm responding to Brenda fro IL--I too have tried to make peace and accept this condition for what it is...I just invested in a topper that was made for me and still getting used to the idea of wearing it but even my son and husband didn't initially notice....they thought I had just had a blow out!    I too have tried injections, different meds. foam-and finally decided it was time to smile and move forward.   (Not always easy but necessary for my sanity)  Thanks1

Comment by ElizabethRYT on November 15, 2015 at 10:52am

My dermatologist tells me that Latisse will grow here on 'anything'.....but that is not always the case, from what I have read here.  Some cannot use it at all because it is very irritating to the skin, or can be.  It is also expensive.  However, it is worth a shot I think for anyone who wants to try it for eyebrows or lashes .

Comment by Anne Louise on November 14, 2015 at 9:52pm
I bought Latisse a while ago to try to save/regrow my eyebrows. I only had a few left. The hairs that were there got longer and a little thicker but I didn't see any new growth. I recently resumed for my eyelashes because they seem to be thinning and I think it is helping. I throw the excess over my bare eyebrows (now tattooed) for the heck of it and have seen nothing. This has been since September.
Comment by sallylwess on November 14, 2015 at 8:52pm

I already have lost my eyebrows.  Do you think the Latisse will work to bring them back?

Comment by Maddy, California, U.S. on November 14, 2015 at 2:30pm

Most insurance plans in the U.S. (not sure where you are located) won't cover it unless you are diagnosed with glaucoma (the original intent of this medicine). I always ask my derm for a 1 year prescription (12 bottles) and then I order them through a Canadian pharmacy in 3 bottle increments. Three bottles cost a little less than $60...which lasts me for at least 3 months. This is the pharmacy I use and they have always been reliable.  http://www.bigmountaindrugs.com/   Also, I order Bimatoprost [Generic version of Lumigan] .03% 3 ml. bottles (Lumigan is the same as Latisse here in the US). 

Comment by ElizabethRYT on November 14, 2015 at 2:13pm

Thank you, Maddy : )  That makes me feel better again gaining hair back...Latisse is so expensive, so I am just curious if it were written as a prescription here, would my insurance cover it ?  I am writing down the generic name to help.  Much appreciated!

Comment by Maddy, California, U.S. on November 14, 2015 at 12:54pm

I have been using Latisse on my eyebrows and eyelashes for years (basically since I first started noticing loss) and it works for me. I get a prescription from my dermatologist and order it from Canada (generic Bimatoprost) and I am almost positive that this has saved my eyebrows.

Comment by ElizabethRYT on November 14, 2015 at 9:14am

Hello all-  I am curious about the use of Latisse to grow eyebrows back. After 4 weeks of topical steroid spray, this is the recommendation of my dermatologist to get hair back.  Has anyone had any success with this product?

Comment by Brenda, IL US on November 13, 2015 at 10:21pm

I haven't been on here in a long time.  Thought the FFA had burned itself out.  Had to stop plaquenil that i'd been on for lupus since 2011, plus a major stress in my life and I've now lost another half inch all around my face.  Can't hide it anymore. I have to decide on a wig or topper or just shave my head.  I've tried just about every diet, cream, foam, injection, etc.  Acceptance is all that's left.

 

Members (599)

 
 
 

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2026   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service