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Comment by AnnieMay on September 12, 2017 at 12:19am

Sallywess- I echo everything that Jules said. Thank you for sharing.

Comment by Jules Australia on September 12, 2017 at 12:17am

Hi Sallylwess i have been a member of this forum for a couple of years now ( had ffa/lpp) for at least 5yrs......i live in Australia......i just read your blog & whilst having read many of your posts over past couple years (including your story on the carf website, which was so rawly & honestly written), i already had much admiration & respect for you.......but have even more after reading this heartfelt, deeply honest blog......you are a wise, beautiful, brave woman who seems to be able to describe so well the feelings that i think many of us have felt, trying to live with this chronic, painful (both literally & what it does to our peace of mind/sense of well being) disorder which seems to go on & on & on for so many of us. The psychological effects are one of the most difficult challenges we face living & dealing with this on a daily basis. If i manage to find even half  the strength & courage you have found through your long drawn out journey i'll be very happy indeed. Thankyou again for telling & sharing your raw, honest, brave journey....you are such an inspiration & it helps me........ You really are a beautiful soul   .........jules australia

Comment by AnnieMay on September 11, 2017 at 11:56pm

To add to the microblading discussion: it's been almost 10 weeks since I had them done and it's been a little bit of a roller coaster ridefor me. They were way too dark at first, then they were kind of an opaque "milky" color, and now they are very patchy and have a gray/green color to them. I know we picked out a warm brown color so I'm so disappointed. It sounds like others have had color issues as well. Ughhhh. . .I also feel like I have red scarring where it was done. Such a bummer. I was going to get a touch up but I am way too nervous that it will get worse. From what I'm reading from all of you this could be because of FFA?? I'm not trying to discourage anyone from doing it because so many others have good results.

I will do the best I can filling them in and my daughter keeps reminding me that they're better than they were.

Comment by Minter on September 11, 2017 at 3:08pm

Sallylwess, back here again having just read your blog.

You are a beautiful lady with or without hair and I thank you for sharing your words about this stupid disease. 

Comment by Joy on September 11, 2017 at 2:16pm

I have also had the ridges in my nails and my big toenails separate from the top - not all the time but it takes forever for them to grow out.  For a long time I thought it was from wearing shoes that were to tight but since everyone has been talking about this lately I did some more digging and actually both of those issues are lichen planus.  This question is for you Sally or anyone else who has seen Donovan as I know he checks peoples nails - what did he suggest about that - the skin condition is suppose to clear itself in a couple of years.  Looking back over the years - self examining and thinking as usual - I know that I have had a small area of this on one of my big toenails long before the FFA and I also know that I had over the years - probably 9-10 years ago just a small pimple for lack of a better explanation on my head on one side or the other - just occasionally - so was all of that just a precursor for lichen planopilaris and FFA?  Also does that mean that we are just hypersensitive to sunblock and ingredients - actually an allergy perhaps - after getting or maybe causing those two issues.  How many have had or did not notice that we had these issues going on long before a diagnosis which sort of - in my thoughts leads us back to the gut issue.  Sorry guys not trying to be tedious just thinking.

Comment by sallylwess on September 11, 2017 at 1:48pm

Some of you are not on Facebook, so I am giving you a link to the blog post I recently wrote about my hair loss journey.  https://sallysbloggingspot.blogspot.com/2017/09/living-with-hair-lo...

Comment by Nina Jones on September 8, 2017 at 12:44am

Sallylwess how sweet to say that - it's really appreciated. Lucky you with your eyebrows...mine are tattooed red ( not deliberate I hasten to add) when I didn't even need them done. Still they're getting the laser treatment too and with clever makeup they truly look normal' and the shape is really nice so that's a bonus. Funny thing I have been a 'member' of our Alopecia forum for ages now always getting the emails popping up but in truth I ignored them (my loss not yours) because I had this half baked idea I didn't really need to share my Alopecia stories because that meant I had it. Which is plain daft because I do have it and ever since I started communicating with you guys, I am dead proud to be a member of this exclusive club. As I said I'm heading off to Corfu today for some fun in the sun but I'll be checking in when there and keeping in touch xxx

Comment by Polly UK on September 7, 2017 at 6:47pm

Sorry I was diagnosed in 2013 not 2012 so was taking Hydroxychloroquine for about 3 years. I'm thinking about starting it again soon, my dermatologist said he was happy for me do that if I felt the FFA was worsening.

Comment by sallylwess on September 7, 2017 at 6:38pm

Nina Jones, you are a breath of fresh air.  We need you here.  You keep it real, and your advice is fab.  Live life well even if your hair is falling out by the handful.  I agree we must be creative too.  Once I no longer could disguise my hair loss, I turned to toppers, scarves, headbands, and hats.  I also had my eyebrows tattooed.  I dress well and have my nails done.  I even go to the hairdresser and have my weird looking hair "styled."  Last time I was there, two young hairdresser kept looking at me.  Finally they came over and said, "You have the best eyebrows we have ever seen.  We had to get a closer look."  That made my day.  Finally, Liz, the photo of your thumbnail is almost exactly like mine.  I do think this goes with FFA as do the weird papules on my chin.  

Comment by Polly UK on September 7, 2017 at 6:15pm

My nails are slightly ridged and I also have a vertical split in one nail. I was diagnosed in 2012 but had lost my eyebrows several years before that. I took Hydroxychloroquine for 4 years and was working well but I gradually developed some dark skin pigmentation around my lower face and neck which my dermatologist said was a rare side effect so I stopped taking it a year ago. My skin is at last back to normal but my hair is back to shedding loads every day and is moving back quite quickly especially at the sides!

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