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Permalink Reply by Karen Smith on January 1, 2012 at 9:36am

My daughter has had this for about 2 1/2 years now, She has her eyebrows tattooed, wears false eyelashes and all lace wigs that she tapes on and wears for a couple of days before changing. She is in college, has a ton of friends, dates and is having fun. She copes by not dwelling on it. She has an amazing happy disposition. This condition is so unfair and such a great loss but it does not have to ruin your life. Please feel free to ask me questions if I can help.

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Permalink Reply by Fabiola Hypolite on January 2, 2012 at 6:32pm

Hi Karen

Thanks for your message I am also wearing lace wigs and have had my eyebrows done etc.
This is a massive shock to me as its all happened in such a short period of time in 3 months I have got no hair absolutely anywhere! 
It's hard and I am sure I will get stronger? 
Just wish there was more help and advice out there for us suffering from this terrible condition with no explanation?

:0)

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Permalink Reply by Karen Smith on January 2, 2012 at 11:05pm

I know. You go from nevering even knowing this is possible to total hairloss in such a short period of time. We were scrambling to find solutions when this happened. we tried steroids and then sulfasalazine before quitting treatment. My daughter may try alternative treamtments in the future but is tired of Dr.'s at the present. It somehow helps to know that there are others surviving with this condition. You have to decide to go on and just deal with it but it is a huge loss and adjustment. Feel free to message me if I can help. Karen

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