Alopecia World
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Recently diagnosed and have so many unanswered questions!
I was diagnosed with Alopecia Universalis around Thanksgiving of 09 while I was 6 or 7 months pregnant with my 3rd child. The last picture taken of me was November 6th and I had a full head of hair; the same hair I'd had my whole life. By the 2nd week of December I had lost all of my hair, body hair, eyelashes, and most of my eyebrows. It has been extremely hard for me to cope with this because I have never had problems of any kind up until now and my doctor is telling me that AU usually develops when you are a child or a teenager and also that it is very rare and chances of regrowth are very slim. I have been told that this is not pregnancy related and pretty much there is no clear explanation why this happened to me. I am so confused and have so many questions. This all happened so rapidly and my doctors really aren't helping- in fact my prenatal doctor knows nothing about this condition and just switched me to a different doctor at 8 months pregnant... :( I feel frustrated, confused, alone, and slightly bitter about the whole thing!!! Anyone else that has had a similar experience or just some advice; anything would be helpful. Thank you so much!!!
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Comment by Natalie on January 7, 2010 at 4:32pm
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Hi Anna! So sorry to hear that your alopecia had such a quick onset. Please feel free to ask me any questions - I am also AU and would love to help any way I can :) It's a rough journey, but there is definitely plenty of light at the end of the tunnel :)
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Comment by Joy on January 7, 2010 at 5:26pm
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Hi Anna, I understand all the feelings you are having. This is a good place for support and info. You are definitely not alone! I am in the process of finding hair to wear and it can be overwhelming but there are tons of great people here going through what you are...i hope that is of some comfort!!
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Comment by Coleen on January 7, 2010 at 9:28pm
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Hi Anna, I know how you feel, my hairdresser found a patch of hair missing around Thanksgiving of 2008 and by the end of the year I had lost all my hair, my eyelashes and my eyebrows. The first doctor I went to wasnt much help, so she sent me to downtown Chicago and I found a very nice and caring doctor there, she really listened and tried to do everything she could to get my hair back. Of, course I didnt get any hair back, and I have been hairless for two years now. I know this isnt encouraging but wanted you to know your not alone.
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Comment by Marie on January 8, 2010 at 12:14am
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Anna, I had the "luxury" of losing my hair patches at a time -- not all at once. I got to accept it slowly and develop a response. But, what a shock your situation must be. I can't imagine it. I don't know who will have thee answers you are lookingfor, but if they exist, you would probably find them here.
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Comment by lynne on January 8, 2010 at 3:49pm
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im so sorry to hear how sad ur feelin, its the hardest thing to ever deal with, u'll get all the best support on this website 24/7, any questions just ask, always hear, much love n hugs ur way {{{{hugs}}}} xx
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I My hair loss started at age 2 but really got worse after every pregnacy ,the last time I was finally diagnosed with hypothyroidism. But it grew back, medication change and it fell out grew back. Now I have some type of endometrios and it all fell out. This time I shaved the little that was there and said the hell with it!
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Comment by Stephanie on January 8, 2010 at 11:30pm
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Hi Anna, I know just how you feel. I lost all of my hair when I was pregnant with my 4th child and the doctors told me the exact same thing. Is your 3rd child a boy by any chance? So far, everyone I've met that got it when they were pregnant all had boys. I'm here to chat if you want and you can read more of my story on my support groups website. www.morethanmyhair.org. Hang in there it does get better!
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Comment by Anna Thomas on January 11, 2010 at 5:00pm
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Stephanie, that is soooo crazy you say that because yes I am expecting my first son! And I have been telling my old man through all of this.. "Only YOUR son...!!" lol.
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And gosh, hearing you say that makes me want to dedicate my life to researching this disease!!! I think that's the hardest part... not having answers :(
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Comment by Rebecca Cox on June 3, 2010 at 11:12pm
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Hi Anna just wanted to say that it is always possible for your hair to grow back !!! after two years of being AU I am now growing hair it is patchy now but the color is coming back my DR says that stress might be a big part of why my hair fell out to begin with. He also told me that it is unusual for people with this to grow hair so I am thankfull for my patches. Just in case you decide to try some over the counter stuff heres what I have been doing. I wash my scalp with a shampoo called Nioxin you can get it at wal-mart its about $20 a bottle. then I use the Nioxin Scalp Therapy also about $20 and leave it on in the shower about five minutes or so (DONT FLIP OUT BECAUSE IT WILL TINGLE) Also I take hair skin and nail vitamins the brand is Pharmassure and you can get it at Rite Aid. It is also about $20 a bottle for 120 pills take two a day I like to take one in the morning and one at nite. I dont know if this will help you or not I know the shampoo and pills are expensive however mine has lasted a long time now. I really hope that this helps you or at least lift your spirit some I had learned to not worry so much about it and about that time is when the growth started. lots of hope for you:) Just remember try not to stress it to much
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