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Comment by Jules Australia on November 2, 2017 at 4:25am

Hi AnnieMay, I have had lichen planopilaris & FFA for at least 5 years now; that was when (out of the blue) i had a sudden onset of a burning sesation over top of my scalp, odd tingling/crawly sort of feeling in front & my scalp  became extremely tender; sometimes it was a kind of prickly, crawly sensation& my scalp felt raw, dry & tight; for some months & especially the couple of weeks prior to onset of scalp pain/tenderness & later a horribly haunting itchiness, my hair txture changed from a softer, looser wavy/curly to becoming extremely dry, course & very curly growing more kinky (not in a nice way), like wierdly kinked. I've lost probaly around an inch (or a bit more) back from forehead, bi-temporal & all around my ears....i have also had diffuse loss over my whole scalp. My biopsy stated that the features were indicative of lichenplanopilaris & FFA, & also said it showed no evidence of androgenetic alopecia. I have done a huge amount of research on this disease & come across some information that says lichenplanopilaris can either appear as patches of hairloss or more diffuse over scalp. I have also had a lot of tiny sore papules (coming & going) over past 5 years; but also, during that time, in between painful periods, i have experienced my scalp sensations to have somewhat calmed down (where scalp tenderness became much milder, not so problematic & hairloss very very slow). The texture eventually, after about 18 months did improve & became less kinky. It has, at times, been pretty much a nightmare, to be not only find yourself with a scarring alopecia, but for the hair to change to such a horrible texture & to it off the nasty scalp discomfort just to remind you that the disease is continuing..... at times it's a real challenge living with this& can be quite haunting!!

Comment by Donna on November 1, 2017 at 1:08am

Annie, my Dr. also diagnosed me visually with FFA but did not mention doing a biopsy.i have my eyelashes, but eyebrows are almost gone. Right side temple & right side eyebrows much less hair than right side. I haven’t noticed an unusual texture although it seems a little dryer. I owe that to,the Rogaine foam & the clobestatol I’m using. Last night I was doing research on this disease & it made me really depressed. I have to stop doing that. But it’s hard.And illustr8r I thought the same exact thing, I wish someone famous would come forward to bring attention to FFA so we can find a cause or cure.

Comment by Anne55 on October 31, 2017 at 11:00pm

AnnieMay
I have the same issues as you. Frontal receding, temples receding and all over thinning. The doctor diagnosed me with FFA visually, but the biopsy came back Androgenic Alopecia. I have also lost my eyebrows and most eye lashes and much of my body hair. My hair texture has changed, curly and a little straw like. Some days I am so depressed, and other days I’m ok. I wear a wig to work, but do not feel completely comfortable. Most days I hide in my house, not quite the life I wanted.
Anne55

Comment by AnnieMay on October 31, 2017 at 10:42pm

As some of you have said there are ups and downs seemingly everyday. One day I feel sort of ok but the next day I am a mess. So long to get ready every morning trying to hide my "secret". And with everything thing else the texture of my hair is also completely different than it was a year ago; receding top and sides, all over thinning and shedding everyday, but also dry and straw like, doesn't even feel like my own hair? Does anyone else have overall thinning and such a texture change??

Comment by illustr8r on October 15, 2017 at 12:04pm

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.

 

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