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Comment by Linda from Cincy on August 15, 2014 at 7:07am

English, Irish, Swedish. . . most FFA patients women.  This sounds like the demographic for rosacea. . . which I have also struggled with since my late 30's, early 40's - when my hormonal balance started to get out of whack.  The more my female hormones have dropped the more issues have popped up--now this!

Anyone else have rosaca, seb derm - other types of inflammatory skin conditions?  I've always heard rosacea is chronic, progressive.  Possibly the inflammation has spread to our scalp/hair follicles from our faces?  This might explain why our eyebrows are often the first to go?  Drugs like spiro and also finacea have helped rosacea patients and they are antiandrogens.  

Comment by cubbieblue on August 14, 2014 at 11:33pm

Kpengell, I think we might be seeing the same doctor at Northwestern. I'm wondering how long you used the Beta Dip before deciding that there wasn't much of a difference.  I am using that now after trying Clobetasol Proprionate for a few months and thinking that it didn't seem to help.

I also am of Swedish, Irish, English (and Scottish) lineage and coincidentally I also had a skin disorder of some kind in kindergarten or first grade, but I don't think it was terribly serious.

I'm also curious if anyone knows how long it generally takes for FFA to burn itself out.  Although I am recently diagnosed, I feel like I am in my third or fourth year.  Thankfully it does seem to be progressing rather slowly.

Comment by Kristen P on August 14, 2014 at 5:17pm

Hey all! Thought I'd comment since I am in America. I'm being treated at Northwestern Medical Faculty Foundation in Chicago. I started steroid injections in January. I received them in Jan, March, and last week. I had an appointment in May but things were stable so they skipped injections (since they have side effects, as mentioned.) I noticed a flare up late July and she did document a little additional loss. I go back in six weeks. She calls FFA the bane of her (and many dermatologists) existence, since little is known about what causes it and there is no cure.

I am not taking oral medication. I use Lumigan (which is typically prescribed for glaucoma) on my eyebrows because it has the same active ingredient as Latisse...but insurance will cover it. My eyebrows seem okay. I have used both Fluocinonide .05% and Betamethasone Dipropionate .05% on my hairline. I haven't seen much of a difference in them but find the BetaDi has a more offensive smell. 

I am a pretty young "victim" of FFA. I would say it started when I was 34/35, but wasn't officially diagnosed until last year, right after I turned 36. I am not pre-menopausal. I had a DIFFERENT extremely rare skin disease when I was younger. I was hospitalized for chronic bullous dermatosis of childhood when I was 8 years old, and received treatment for it for about 1.5 years after.

I am very fair, with English, Irish, and Swedish lineage, which seems to be pretty common among FFA patients. My derm did mention they are now seeing it in all races and also in men. Maybe now that men are getting diagnosed we'll see a better focus on research! :)

Good luck to you all.

Comment by Jean on August 14, 2014 at 2:44pm

Forgot to mention in the email exchange with Debs (huge thanks for the brilliant fact sheet, Debs) that my derm has recently been to America to check out any new thinking on FFA.  She said that whatever treatment sufferers are using, it should be changed every 6 months and this has the most positive results.  No absolute model for success though I'm afraid!

Love Jean

Comment by Mary on August 14, 2014 at 2:20pm

Seen consultant today. Continue on anti malarial tablets and dermovate cream. Hair loss appears to not to have changed over last six months. Good news.

Comment by Debs on August 14, 2014 at 1:31pm

Marian I suggest you pose this question on www.wigsupport.com this site is based in the USA so the ladies can definitely help you find replacement hair in your area.

Comment by Pam on August 14, 2014 at 10:40am

My hairpiece was done by Rob Davidson-Lamb at Barefaced in Cheltenham Gloucestershire UK.

He has got a website with all his details. He does some things over the internet, and I guess it could be possible for him to order one if you could measure it youself and match the colour, and then fit it, but better for him to do it in person!

Comment by jess on August 14, 2014 at 9:15am

Liz, what hairpiece are you using?  Is it one like Pam's?  I have still not found something yet.  I am in Kentucky....

Comment by Marian on August 13, 2014 at 10:07am

Thanks Rita! I will call when I get back to town this week. I am also interested in the stick on ones that a couple of the UK ladies had made, I have a whole lot of loss in temple area as well as bang. Sounds like I'll be wearing a wig quilt with all the bits but can't stomach the full wig alternative. Does anyone know where these "side burns"can be found? Still trying all the meds but need a back up plan.
Ps I hate wind!

Comment by Rita - Canada on August 12, 2014 at 7:10pm

Marian, I live in Ontario & purchased the hairpiece from Rochetti's. It has 4 clips on top of head. She cut it according to my length & a little bangs into it. Mine is titled 'EasiPartHd' (heat difiant clip in crown volumizer)  on the box it has a website with a toll free # in Canada and can perhaps guide you to a place near you.  www.easihair.com   Hope this helps.

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