When I see a strand of my hair, I pick it up right away and check to see if it has the root attached. If the root is attached my heart hurts for it. If it’s broken then I’m a little relieved because it means the other half with the root is still on my head.  This is a never ending emotional roller coaster. It’s really a nightmare I want to wake up from but the truth smacks me in the face several times a day when I see a strand on my desk, floor, bed, chair, counter, etc. I have lichen planopilaris. It’s a rare form of scarring alopecia. I am slowly and permanently losing my hair. I’ve known about this for a few months. I am doing everything in my power to save the hair I have on my head. It’s hard because the disease is incurable. All I can do is slow the process down. I go for cortisone injections monthly. They hurt and I always cry afterwards. I don’t cry because the injections hurt, I cry because the cortisone shots are a reminder that I have alopecia. There are days I go about my business and don’t think about it at all because some days I shed less than others. I started acupuncture three weeks ago. Those needles don’t hurt but again laying there, in the dark, in a quiet room, listening to soft music, which is supposed to be relaxing and therapeutic only forces me to think about why I’m there in the first place. I’m not dying. I know it’s not terminal. I know that there are women fighting for their lives, who would trade places with me in a heartbeat, if living for them meant all they had to do was wear a wig for the rest of their lives. My friends, family, co-workers tell me I’m beautiful, with or without hair. They tell me they’ve researched and have found beautiful wigs on line, made from real hair. I know they mean well but I don’t want to wear anyone else’s hair. I want my hair because my hair is my crown.

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Comment by Cheryl, Co-founder on September 12, 2017 at 11:53pm

Hi Adie, your feelings are real and you have the right to feel them.  That being said, I do believe you will need to find your way to acceptance.  Feel free to message me.  

Comment by Deb on September 19, 2017 at 4:31pm

I agree with you, this is effects us mentally so much so that no one understands except others who have lost their hair. 

FDA just held a public meeting on Alopecia.  Two companies are currently in trials.  Hang in there, they will find a cure.  In the meantime, wear your wig proud.

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