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Comment by Heidi Short UK on July 4, 2012 at 5:27pm

I have recently been diagnosed with frontal fibrosing alopicia and interested in finding as much info as I can about this disease

Comment by KarenGinny - Iowa, US on June 28, 2012 at 11:16am

Celia - don't worry about the typos. That would be hard to type with one hand, hope it heals up fast for you! I'm sure any type of alopecia would be hard to deal with, especially for the younger kids or teenagers. I've had days when I didn't want to leave the house or volunteer for something at my son's school because I don't want the other moms to look at my hair, but then I realize I need to get on with life and can't stay at home forever. I am a stay at home mom, and try to help out at my boys' schools, Cub scouts, Boy scouts and in the summer my son who has autism plays Buddy Baseball and I am on the committee for that. I just don't want someone to think I'm losing my hair because of cancer or some other serious illness. My hair seems to be staying the way it is for now, so I'm just trying to style it so it's less noticable. I just pray it doesn't get much worse any time soon. I see lots of older women with thinning hair, and I am an older mom, but I don't want to be mistaken for my kids Grandma! I am also trying to lose weight with Weight Watchers, eat more healthy and take vitamins in the hope that it will slow down my hair loss, and make me feel better. Hope you're having a good day! Karen

Comment by KarenGinny - Iowa, US on June 28, 2012 at 9:43am

Hi, It has affected my self esteem also. I'd always had thick curly hair - too much hair sometimes. Over the past 2 years it has become thinner all over, more on the right side and all along the front hairline. I still have eyebrows and lashes thankfully. And the texture of my hair is different- more thin and frizzy, just not the same. I've gone to more of a flat hairstyle with bangs in the front and I use a curling iron or flat iron to smooth it out. The front hairline has about 1- 1/2 inches missing and I worry that it will recede more and be harder to cover. I just feel ugly and feel like I have to hide it with the hair I have left or wear a hat. I worry about being outside without a hat, going swimming, the wind blowing it all over. My husband says not to worry about it, because he loves me no matter what. and I know it's not a life threatening disease, but still it just makes me feel bad. I just don't like being stared at. Although I'm used to stares sometimes - I have a 12 yr old son who has autism and sometimes he behaves like a younger child and is too loud or sometimes will have a meltdown in public. And when my doctor told me the news he was just like "you have ffa, sorry, goodbye" Didn't offer much in the way of treatment or anything else. I held it together in his office but was crying all the way home. The people I've told are like "it's just hair" and "at least it's not anything worse", but Really how would they feel if it was THEM?? if they woke up bald tomorrow how would they feel about it? thanks for letting me vent!!! It feels good to talk to someone who understands!!

Comment by KarenGinny - Iowa, US on June 27, 2012 at 1:10pm

Hello, I sent a message to group above, but don't know if you got it. Anyway I was diagnosed with FFA this spring and am still getting used the idea of it. It happened gradually at first, just scalp problems, patches of hair along the back of my hair -neck, that eventually grew back, then thinning mostly on one side and then the loss of my temples, around my ears and forehead. I've been able to hide it for the most part, but still hate that I know it won't get better, and may get worse. I hate wind! I try to bring a hat when I know I will be outside. I'm 47 with 2 boys, ages 10 and 12 and I want to be active with them. Would like to know how others deal with it. Thanks!

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