Comment

Comment by Yash on July 29, 2018 at 2:51am

Hi everyone. It’s been a while since I have posted.

I was just wondering if anyone’s disease has gone into remission/disease completed its cycle. I never went back to the dermatologist as I didn’t want to take the medication or steroid injections but I remember her saying it had a cycle, different for everyone. 

Comment by BubbaLu on July 28, 2018 at 9:40am

I have consulted an attorney who does not want to take on my case but I feel certain there will be a class action law suit eventually.  

Comment by Bloomingdalekid on July 28, 2018 at 9:35am

BubbaLu - Bloomingdale kid here.  I wonder why you are getting a DoNotReply address from Alopecia World?  Thanks for your reply.  As I stated, mine started shortly after Botox.  There's not  a dermatologist in the world that would concur - it would cost them their livelihood.  

Comment by BubbaLu on July 28, 2018 at 9:30am

I received an email from Bloomingdalekid but it was posted with a DoNotReply address from Alopecia World.  Did anyone else get that?

if you are out there Bloomingdalekid, I am 100% certain my FFA was triggered by the Juvaderm that is advertised to last 2 years.   Toward the end of the first year, my auto immune started attacking my cheeks and at that same time I started noticing tiny bumps along my front hairline.   

I read somewhere that a majority of women getting FFS are affluent non-smokers.  

Comment by Minter on July 28, 2018 at 8:24am

That is so awful that you went through the microblading and now your brows are gone- My tech had to keep switching blades as she didn't think it was going deep enough for the color to stay because of my Stupid FFA skin. 

Comment by PBsunshine1 on July 16, 2018 at 9:39pm

Hi everyone.

I had micro blading on my eyebrows last year before my diagnosis. My skin is so thick I cried the whole time she was doing them. :( they looked great but the scar issue just kept peeling now they are all gone.

Comment by KarenD on July 16, 2018 at 8:28pm

Curly K, did you get the retinol treatment that was mentioned in you CARF notes?  Can't wait to see you new hairdo!

Also to those talking about the thick eyebrow skin, I know my dermatologist mentioned to me that atrophy of the eyebrow area was part of FFA. So many extra little things go along with this disease that I never realized when I first read about it!

Comment by Halfbakedwho on July 16, 2018 at 7:29pm

Hi everyone, I haven’t posted in a while. I have been trying to take a break, to not think about it, to get on with it, etc. 

There has been more hair loss on top. Again, no one but me notices but I go through my freak-outs, like tonight, wondering how I will deal with this. Since my diagnosis last year, I have lost a good centimeter all around. It’s been hot here, so I wonder what having to wear hair will be like with the heat. IT’s also because I saw old pictures of myself on FB and they depressed me. 

I am planning a new business that will keep me in the public eye a bit. So that’s a bit initmidating, and so yuck to that. 

I again admit I haven’t been diligent nor vigilant with all the hair-crap supposedly needed to keep this at bay; next week I’m going to see my original dermatologist at the Clinique Soubouraud in Paris instead of Dr. Famous Man whom I saw in February. If you recall, Dr. FM took me off just about everything except for cortisone lotion and tetracycline. Since nothing seems to make a difference I know I just use things when I think of it. I’m not sure what I’m expecting with Dr. Less-Famous but she took a lot more time with me, which is something. Maybe it’s just a way to stay hopeful and switch things up...

Afraid - I am finding Denial not a bad Defense but it only goes so far. It works well depending on my frame of mind, the weather, and the mood of my hair too of course. I look like a woman with a receding hair-line, so... like an effeminate 50-ish man. Not to offend anyone, but maybe this is a good Trans look. Or something. Not what I’m going for in any case. 

Lastly, because of hair-trauma but not only - I am getting my filler-injections again. Expensive, but I’m saving for them. I figure, there’s more face to see, so I will try to make it look as decent as I can. 

It’s 2 in the morning and in France no AC so too hot to sleep and hot flashes besides, so thanks for listening...

Comment by CurlyK on July 16, 2018 at 6:53pm

Hi ladies! Be kind to yourself. Acceptance comes gradually. While I know I'm in a state of acceptance, I still have days when I wish I had a head full of my own hair instead of my hair piece. I still have days when my head itches which serves to remind me of this crazy disease.

I get my new hair piece in two weeks. I'll post a new picture once it's cut and styled. I guess you could say this is one strangely "fun" thing about wearing a hair piece. I can really change it up if I want! I've been looking at new styles to show my stylist.

Since the CARF conference, I have obtained a serum and night cream with Retin-A in it. I can already tell a difference in my skin.

Comment by Minter on July 16, 2018 at 6:36pm

@AnnieMay, my brow tech kept asking me how old I was because of my thick skin, she was using the sharpest blades and still was going through them like crazy, sigh.  

 With your micro needling, as long as you trust your aesthetician & have talked it through with her about your skin and it's special needs thanks to stupid FFA  you should be ok I would think, maybe even do just a small bit and see how it reacts? I would love to get a procedure like that done to have smoother skin, though I am getting botox done after the summer when I am (hopefully) done sweating like a I don't know what because of this awful heat & humidity & of course the sweaty side effects of stupid FFA!!  

I haven't tried Joan Rivers great hair day, yet.. I use Boost n Blend & I am happy with it, but I read such good things about the Joan Rivers that maybe I should try it one of these days.  I also use Revolution hair powder on my sides, it stays all day and I love it.  Our morning routines are so exhausting, you are so right, I've gotten pretty good at the powders and stuff, but it would be so nice to just get up and not need to do all this "stuff" to our hair and now skin to just look normal. 

@Donna, I remember my 1 month touch up as not being that very painful.   She was ready for my skin this time though, she didn't use the blades, she used the machine as it was able to penetrate deeper and I think that helped a lot. 

• ‹ Previous
• 1
• …
• 62
• 63
• 64
• 65
• 66
• …
• 507
• Next ›
• Page