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newly diagnosed by GP
Hi,
I'm newly diagnosed by my GP. I'm waiting for an appointment with the dermatologist, but with the help(?) of the net, have self diagnosed in some respects. I believe I have the ophiasis pattern, although anywhere I have hair lost seems to be growing back in the typical fashion (fine, white). I have recently discovered my nose hair has disappeared, and it seems my eyebrows and eyelashes are getting thin. Any thoughts? Does this lead to totalis or universalis? I'm trying to keep my spirits up!! I'm also trying to cope with what's going on. Any info or advice would be greatful!!
I'm newly diagnosed by my GP. I'm waiting for an appointment with the dermatologist, but with the help(?) of the net, have self diagnosed in some respects. I believe I have the ophiasis pattern, although anywhere I have hair lost seems to be growing back in the typical fashion (fine, white). I have recently discovered my nose hair has disappeared, and it seems my eyebrows and eyelashes are getting thin. Any thoughts? Does this lead to totalis or universalis? I'm trying to keep my spirits up!! I'm also trying to cope with what's going on. Any info or advice would be greatful!!
Replies to This Discussion
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Permalink Reply by Stephanie on
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Carly, You are going to learn that everyone's hair loss story is different, but yours and mine are similar. All my hair besides a circle behind my ears and my eyebrows have come back. I have AA and the area that took the longest to grow back was from ear to ear at the nape. I assumed it would not grow in as I had read that ophiasis pattern is stubborn, and perhaps the area that is still missing will never grow back, but I now have a hair line above my ears and in the back.
Hang in there! The best advise I can give is just to "let it go", learn to be happy without your hair as it does not define you.
Do whatever it takes for you to feel good about yourself, whether that means shaving, wearing scarves, hats, or wigs. This condition is so unpredictable that you can get caught up in it, and the anxiety that causes is not good for your health.
Your hair may very well all come back and I sure hope that it does, but in the meantime do what you need to do for TODAY that makes you feel secure and ready to face the world. What I find so amazing and wonderful is the variety of ways people in this support group choose to present themselves and I think that they are all beautiful.
Contact me any time if you want to talk. Good luck!! :) Stephanie -
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Permalink Reply by Tanya Stone on
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HI Stephanie, Did you do anything for the hair to grow back and how long did it take to grow back?
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Hi Stephanie!!
I hope I'm not bothering you, but I have a few questions. Did you go totalis? How long did it take? Did you have steroid treatments for regrowth?
This has been going on for a year now. I still have 75-80% of my hair left, it's still localized to the back of my neck, and regrowth isn't a problem, (I have some pigmented patches now!!), but I feel as though I'm playing the waiting game, as it's still falling out. I'm prepared for everything to go, and sometimes I wish everything would fall out, so I can get on with things.
I had a consultation with a wig maker who thought I was crazy to think I would go totalis, and my family pretty much agrees with him. This sucks!!
Anyway, sorry about the rant, I just feel that there's not alot of people who understand what it feels like to go through this.
Thanks,
Carly K -
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