Replies to This Discussion

Permalink Reply by illustr8r on November 30, 2017 at 12:08am

The state of my eyelashes go from doing fine to panicking about them. I have lost my eyebrows too. Right now, I have noticeable gaps in my right eyelashes and they fall out easily. They are growing in weirdly too like my eyebrow hairs-all twisted and aimed in the wrong direction.

I’ve started using Latisse again. Not sure if the odd growth is because of the Latisse or the FFA.

Very disheartening as I used to have nice thick long lashes.

Permalink Reply by NatalieW on November 30, 2017 at 1:22am

Hi Curly, I too have had my eyebrows tattooed after spending too much time each morning pencilling them in! My eyelashes have been going over the past few years and I’ve started using a cheap lash thickener but will probably try Latisse next year. I wore false eyelashes to my 40th 2 years ago and the beautician said she had to use the lightest set as my own lashes weren’t thick/strong enough to support much. They were ok and lasted a few weeks but I’m sure I pulled out a few lashes when I took them off. Good luck!

Permalink Reply by Jess on November 30, 2017 at 1:46am

I also have lost all of my eyebrows. Last March, when I was still trying to figure out what was going on, my eyelashes seemed to be thinning, as well. I started using Latisse and it made a huge difference. I recently started cutting back its use in hopes of using less for maintenance, and I found that once I cut down to using it once a week, my lashes seemed to start thinning again. I'm back to using it at least every other day, and my lashes have started to fill back in. I use generic bimatoprost, which I pay about $50 for with a GoodRx coupon, and I've been able to stretch the one bottle out for more than 6 months. 

Permalink Reply by Jules Australia on November 30, 2017 at 3:38am

Hi CurlyK, I have had ffa/lpp since at least Oct2012. Noticed i was losing my eyebrows from at least 6 months prior to that and have pretty well none left now......also i hardly have any eyelashes left.....think it was around end of 2011 I first noiced that when i put mascara on they just looked nowhere near as full as normal & over the following year or so most of them have just dissapeared.....just like the eyebrows, as time went on.....I never really noticed them falling out, just gradually had less & less.....same with my arm & leg hair....I noticed that all of a sudden I had no need to shave my legs anymore, & the arm hair all gone as well,....this happened around 6 to 9 months prior to the sudden burning,pain, & tenderness on my scalp (accompanied by hirloss from front & temples in Oct 2012). 

Permalink Reply by Jules Australia on November 30, 2017 at 6:43pm

Curly K, I meant to say how nice your hair looks, you wouldn't know it was not bio, looks so natural. I feel like i'm getting much closer to having to go down the avenue of  'helper hair'.... this disease is just so frustrating & relentless. You mentioned your bonded piece is semi permanent...could you describe what's involved in fixing it, maintaining it etc...do you keep it on until going back to hairdresser or take off each day....do you wash it yourself between visits etc ?? I also have curly hair similar length to yours'....in some ways having curly hair has helped to cover recession in front/sides, but as it continues creeping back slowly, i am feeling increasingly self consious about more & more forehead being exposed & finder it harder to cover as much as previously

Permalink Reply by KarenD on November 30, 2017 at 7:31pm

I agree with you Jules...Curly K looks fabulous!  I must admit that when I am feeling a bit down about this silly disease I look at Curly K's picture to assure myself that a person can get hair that looks so lovely and I feel like I can handle things so much better.  Thank you Curly K for sharing your pics and giving us motivation!

Permalink Reply by NatalieW on November 30, 2017 at 7:53pm

I agree! Your hair looks great and is a great encouragement to us curly girls in the group

Permalink Reply by BB63 on November 30, 2017 at 8:52pm

I agree they look great but can be difficult to apply. I purchased lower lashes and I don't care for them either, too difficult to apply as well.

Permalink Reply by CurlyK on November 30, 2017 at 9:52pm

Thank you for your kind compliments! Made my day!

I'm always happy to share my story and talk about my hair piece. It was the right decision for me. I, too, was in constant depression and anxiety about my hair, using hair powders and makeup to hide it. Being curly, I was able to do so for a while but it got so bad I actually braved it and started wearing scarves for about a month before my hair piece came in.

They made a 'mold' of my head in order to create a custom fit. It's human hair, matched to my natural color and curl pattern. The piece is basically glued onto my scalp around the outside edges. I'm able to wear it 5-6 weeks before going back to the salon where its removed, cleaned, my scalp is shampooed (ahh that feels so good!) and, if I need it, have my natural hair colored to match the piece. That's rare, though, because I don't have much of my own hair left. 

So, I live in it, sleep with it on, swim with it, shower, shampoo and style it just like normal. The bond is so strong I've never had an issue with it slipping or moving. I wash it every 3-4 days and put curl cream in it and let it air dry. Voilà!

I can tell I'm going through another phase with the eyelash loss. I lost them once before during an extreme period of work stress in 2013 - which is also what I believe made this FFA kick in - but I used a Latisse substitute and they came back. I may try that again first before looking at eyelash extensions.

I'll add some photos soon of my actual hair loss so everyone can see what a difference a topper makes. Self confidence totally came back. Didn't want to do all the meds, etc, as there is not a lot of proof it helps hair grow back.

I'm so glad we have each other, ladies. Even with my 'hair' I still have my days when I ask "why me?" It's such a bizarre condition.

Permalink Reply by Liz Lov on December 27, 2017 at 5:04pm

You look really great in your hairpiece.

My stupid ffa has now got to the stage where I have finally bought a full wig and I must say it gave me SO much confidence and I wore it every day over Christmas.

I like the idea of a bonded hair piece though ,I will look for somewhere in London where I live.
So far my eyelashes and eye brows are intact, no hair on arms of legs though.

Reading through posts on this forum is amazing because thoughts and worries that non ffa people would not 'get'  are shared here that are so helpful. Depression and anxiety about the moving hairline are always at the forefront of my mind although I'm a naturally positive person, some days are more 'down' than others. 
It's a stupid, depressing disease and I think of hair issues a thousand times a day. I've been wearing hairbands for about 2 years now and they look OK sometimes but wearing the wig did make me feel at least 10 years younger.
I am not taking any medications as I don't want the side effects that often go with them and from what I read , none of them seem to be effective, although I would love to hear otherwise.

Thanks to everyone who share their stories here.

Permalink Reply by Lauren on December 6, 2017 at 3:50pm

I just had my eyebrows microbladed the other day, wonderful success. 

I am currently losing eyelashes too, only have a couple strands left. 

Permalink Reply by VanessaMiliano on September 6, 2018 at 5:19am

My lashes were falling out from from false eye lashes. Then I started using dermalmd eyelash serum and they are even more lush than with Fake ones. You just have to keep using it weekly. If you stop you definitely notice.

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