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- About Me
- Lost eyebrows in 2010-2011. Had a spot of hair missing above each year - and was diagnosed in 2011 with alopecia areata. In January, 2015, I questioned why the spots were progressively getting bigger above my ears - and progressing to my temple area - and finally the doctor said we should test to see if it is scarring alopecia. In January, 2015, I was diagnosed correctly with FFA. I'm on Celcept, Actos, and Finasteride.
- Do you have alopecia? (Choose appropriately)
- Scarring alopecia
- Are you age 18 or older?
- Yes - I am 18 or older
Lo's Blog
Frontal fibrosing alopecia - help
Posted on January 26, 2015 at 3:30pm 4 Comments 0 Likes
Good afternoon. My name is Lori, and I have been losing hair for close to 5 years. It started in 2010 as a tiny patch above my ear - that my hair dresser saw. Then that got bigger, and the same thing happened on the other side (above ear). I am still to this day, able to "hide" it, as I have a bob haircut, and unless the wind blows, or my hair is wet - you cannot see it. Recently, I went to my derm, and asked if she thought it would stop. She said I had some follicular erythema along the…
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Hi Lo
It's really clever. Have a look at this .... http://www.lucindaellery-hairloss.co.uk/ffa.php My FFP is nowhere near as bad as this. They attached the webbing - the intralace system - by bringing my own hair through it and (sort of) knotting it to new hair. That anchored the system. They did this all the way round, then attached a complete section of new hair - a 'natural' parting - which completely covers the bald bit at the front. I have had it for exactly two weeks, and now I am used to it, I LOVE it. I cannot tell you how different it makes me feel. And no one knows (other than those I choose to tell, of course). Lots of people have commented on how well I look and how good my hair looks - a new colour? A new cut? YEAY!!!! have a look on the website which explains it all (far better than I can).
One thing going to them made me feel was okay about the condition. I had so many months/years of feeling negative about myself and how I looked, and they normalised the whole thing. So now, if I choose to tell someone why I look different, I will, and without any sense of shame or embarassment. Because, guess what? We didn't choose to have this condition, and it is bad luck, nothing else. And absolutely nothing to be ashamed of.
Having said all of that - and firmly believing it, too - I am unbelievably pleased to look like me again!!!
Denise x
Yes, roughly 2" in probably more like 2 1/2, three years. I was in denial for about a year;). My loss started in the front. It thought it was a few pimples that wouldn't go away. Then I thought it was a fungal, or bacterial infection. My regular doctor was giving me antibiotics to clear it up. Finally I went to a dermatologist and had a biopsy. I didn't connect what was happening to my eyebrows to what was happening on my head. Then one day I looked at my arms and noticed, "Hey,ALL of my arm hair is gone! It's amazing how I was able to ignore what was happening for so long. I'm at a crossroads now where, I'm not sure what I'm going to do with my hair. In the not too distant future, I'm going to need a wig, or hairpiece. The loss rate seems to cycle on and off. It's been ramped up as of late. I think it is connected with my allergies, which are in high gear. I've always noticed big jumps in loss in the spring/summer. Who knows?
Hi Lo,
I'm attaching two recent pictures. I have curly hair, which makes it easier to hide the loss sometimes. in one picture ( the one with the sunglasses) I have my hair pushed back and tucked behind my ear exposing the loss. Sometimes I tuck it back behind my left ear and just let it all hang out. The other picture is from today. I push my hair forward at work to hide it a bit more. I wear a pretty deep side part and longish bangs. It looks pretty messy in the photo. I work at an Elementary school. We get messy :). I don't have any eyebrows left, so I paint them on to fairly good effect. I've tried short, "hipster bangs" before, but it really doesn't work, because my bangs are too thin, so I've been keeping them longer and a little messy. Now that the school year is coming to a close here in NY, I'm contemplating something radically different, like an under cut, or a pixie cut. I'm not sure. Oh, and by the way, you're in Pittsburgh, right? I'm originally from Erie, PA, I'm very familiar with yinz;) IMG_0936.JPG, IMG_0965.JPG
I'm not taking anything. I tried topical steroids for a while, but it didn't seem to help. I don't want to deal with the side effects of some of the treatments out there. My loss is still pretty active. I get fewer of the red bump, flair ups since going gluten free. I try to reduce systemic inflammation in my body in general. I look at my situation from a whole body perspective. I don't think it's just about my hair. I think my allergies, skin issues, asthma, and alopecia are all tied together somehow. I'm just trying to make my health as good as I can, and accept the hair situation.
Hello and welcome, Lo
How are you today?
Hi Lo, thanks for accept me :) I also have alopecia universalis, if you want to talk a little with me about it, I am with open arms.
Will get you pix.....sorry I forgot and now off to vacation. Interested to see how the synthetic topper will work as that is what was recommended for beach, etc. where I am headed. More later. Thanks.
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