Alopecia World
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Alopecia Universalis??
Hello All,
A few questions if you don't mind, but here's a little about myself first.
I noticed a patch of hair missing from the back of my neck a year ago, after I dyed my hair. I thought it was some sort of reaction and ignored it. I noticed it getting visably worse by September. My GP diagnosed me with AA and referred me to a derm who didn't have an opening until November.
In those few weeks, I had self diagnosed myself with the ophiasis pattern. Then I noticed not only the hair from my neck was falling out, but my nose hair was sparse, and I'd wipe away the occasional eyelash and eyebrow. The derm confirmed my diagnosis, but was little help. I refused steroid treatment because my hair is growing back on its own, typically white and fine, but there are a few patches that have picked up my natural dark shade.
That being said, my hair is still falling out. 75-80% of my scalp hair remains, but it seems my pubic hair is falling out now too. Ugh, I guess it's embarrassing no matter which way I put this, but everytime I wipe after going to the washroom, there's at least one hair on the tissue. I told myself I would not freak about this until I found random hairs in my underwear. I noticed the first on Monday. My arm and leg hair remained unscathed.
I realize there are no predictions, but does this sound familiar? Is there any pattern to AU? Is AU normally acute? I was under the impression pubic hair was the last to go, am I wrong?
So many other questions. I'd appreciate any feedback!!
Thanks,
Carly K
A few questions if you don't mind, but here's a little about myself first.
I noticed a patch of hair missing from the back of my neck a year ago, after I dyed my hair. I thought it was some sort of reaction and ignored it. I noticed it getting visably worse by September. My GP diagnosed me with AA and referred me to a derm who didn't have an opening until November.
In those few weeks, I had self diagnosed myself with the ophiasis pattern. Then I noticed not only the hair from my neck was falling out, but my nose hair was sparse, and I'd wipe away the occasional eyelash and eyebrow. The derm confirmed my diagnosis, but was little help. I refused steroid treatment because my hair is growing back on its own, typically white and fine, but there are a few patches that have picked up my natural dark shade.
That being said, my hair is still falling out. 75-80% of my scalp hair remains, but it seems my pubic hair is falling out now too. Ugh, I guess it's embarrassing no matter which way I put this, but everytime I wipe after going to the washroom, there's at least one hair on the tissue. I told myself I would not freak about this until I found random hairs in my underwear. I noticed the first on Monday. My arm and leg hair remained unscathed.
I realize there are no predictions, but does this sound familiar? Is there any pattern to AU? Is AU normally acute? I was under the impression pubic hair was the last to go, am I wrong?
So many other questions. I'd appreciate any feedback!!
Thanks,
Carly K
Replies to This Discussion
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Permalink Reply by Barbara Steinberg on
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Carly --
For me, my pubic hair was the last to go -- and when it fell out, it all went very quickly, virtually overnight after all the rest of my body hair and my eyebrows and eyelashes had faded away over several weeks. But, of course, I don't know if my situation is typical or can be used as any sort of evidence about the pattern that AU takes. -
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Permalink Reply by Joan Glover on
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For me, I lost all my scalp hair first, then bdy and pubic hair. Eyelashes were last (and hardest to lose)
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Permalink Reply by Jennifer on
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I lost my head hair first & the rest left pretty evenly, which I have come to understand is pretty normal.
Keep in touch - you have love and support here.... -
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Permalink Reply by Bald and Fabulous AKA Terri on
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For me it was kinda an over the entire body loss at the same time. Slowly. Scalp hair was the last to go, but I figure that was due to doing the injections and other various treatments for so long. Personally I kinda like not having the body hair. Always beach/date ready LOL (not that I have done either in along time LOL)
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Permalink Reply by Rebecca on
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Hi Carly,
The one thing I have learned about having AA and AU is that it is totally unpredictable. After years (25) of having AA, it developed into AU. For me, my scalp hair was the first to go, then all body hair, and finally my eyebrows and eyelashes- over a period of about 8 months. I try to think of the positive side of things, like how much money I save - so many women pay for expensive (let's also remember painful) waxing treatments and so the money I save I use on pedicures or other treats. Any type of alopecia is difficult to deal with but you have a world of support here for you. -
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Permalink Reply by Tuesday on
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I'd say there is no predicatability in hair loss pattern of alopecia. I lost my eyelashes repeatedly for years and would regrow. I didn't even think of it as alopecia. Then my body hair and facial hair started to thin, I still didn't notice. My scalp hair was the last to go. As I said on another post, my father lost all his leg hair - but nothing else - one summer when he was teen. The hair on his legs has not ever regrown and nothing else was affected. So, I believe it's a strange disease that can not be predicted in pattern.
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Permalink Reply by Ellen on
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What you are describing is quite typical. My hair fell out first, and then eyelashes/brows, then arms,legs, and then the rest...
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Permalink Reply by Mar S on
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I lost my scalp hair first, at first slowly in patches, then when it thinned out so badly it just came out in chunks. Body hair was next, then eyelashes and eyebrows at the same time. I tried injections in the eyebrows (that really hurt) but they grew back in a really weird pattern that I just gave up. AU seems to be very individualized, although the end result is often the same. A very strange disease.
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Hello All!
I just wanted to thank everyone for sharing their stories. This hasn't been the easiest thing to deal with. I've told maybe, 20 people, of my condition. The people who I expected the most support from (parents, sister), do not believe in the severity of my Alopecia, and think I'm overreacting, the others just don't know what to say. Needless to say, I don't have alot of support. Anyway, I'm prepared for everything to go. Is it weird that I wish it would happen overnight? I don't think i can handle another year of this!! Hope everyone had a great weekend!!
Thanks,
Carly K
P.S. Whoever said the eyelashes were the hardest, I couldn't agree more. I've already lost some, but there will be tears when they're all gone!! -
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