Hello Wendy. I can so identify with the feelings you are expressing. I have Alopecia Universalis, but did not develop the disease until I was in my 50's. I had finished a multi-stage process of having a prophylactic double mastectomy and oopherectomy after testing positive for the BRCA2 gene and being told this translated into an 85 percent lifetime chance of developing breast cancer. Here I had gone to great proactive lengths to prevent cancer from taking my life (or my hair in the process) and suddenly I lost my hair.
Alopecia initially shut my life down. I was devastated, no one could understand, so I felt totally isolated with my condition and my feelings. I tried wigs and they made me all the more self-conscious, in addition to being so uncomfortable. I was appalled at the non-existence of fashionable head wear for women with my condition. Who wants to wear a "cancer turban"!? Talk about disease accessory. So I made my own head scarf, something I felt comfortable with. I started wearing them. Initially I was of course just as self-conscious, but instead of getting those reactions that come with the assumption I had cancer or was sick, I got compliments on the scarves. What a relief!
After 7 years without hair, my hair grew back in last year. I didn't know what to think, was afraid to get attached to it. I did enjoy it while it lasted, which was about 6 months. I'm not totally bald now, though I would characterize it as patches of hair rather than patches of baldness.
I am very proactive about my health for multiple reasons. Fortunately, I am a previvor and though I've lost my hair, I am healthy. We can't underestimate or forget the value of our health. Even if I had a luscious head of hair, it would mean nothing if I didn't also have good health.
I turned my own solution into a business called 4Women.com. I sell my head scarves there and advocate for greater understanding of the emotional impacts of hair loss for women and girls.
All the best to you. Thanks so much for sharing your story. If upon developing Alopecia, women and girls had instant access to others with the disease, it would help so much. Better late than never.
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Hello Wendy. I can so identify with the feelings you are expressing. I have Alopecia Universalis, but did not develop the disease until I was in my 50's. I had finished a multi-stage process of having a prophylactic double mastectomy and oopherectomy after testing positive for the BRCA2 gene and being told this translated into an 85 percent lifetime chance of developing breast cancer. Here I had gone to great proactive lengths to prevent cancer from taking my life (or my hair in the process) and suddenly I lost my hair.
Alopecia initially shut my life down. I was devastated, no one could understand, so I felt totally isolated with my condition and my feelings. I tried wigs and they made me all the more self-conscious, in addition to being so uncomfortable. I was appalled at the non-existence of fashionable head wear for women with my condition. Who wants to wear a "cancer turban"!? Talk about disease accessory. So I made my own head scarf, something I felt comfortable with. I started wearing them. Initially I was of course just as self-conscious, but instead of getting those reactions that come with the assumption I had cancer or was sick, I got compliments on the scarves. What a relief!
After 7 years without hair, my hair grew back in last year. I didn't know what to think, was afraid to get attached to it. I did enjoy it while it lasted, which was about 6 months. I'm not totally bald now, though I would characterize it as patches of hair rather than patches of baldness.
I am very proactive about my health for multiple reasons. Fortunately, I am a previvor and though I've lost my hair, I am healthy. We can't underestimate or forget the value of our health. Even if I had a luscious head of hair, it would mean nothing if I didn't also have good health.
I turned my own solution into a business called 4Women.com. I sell my head scarves there and advocate for greater understanding of the emotional impacts of hair loss for women and girls.
All the best to you. Thanks so much for sharing your story. If upon developing Alopecia, women and girls had instant access to others with the disease, it would help so much. Better late than never.
Susan Beausang
October 25, 2010 - 6:56amThis Comment
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