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Alopecia: How Did This Give You A Passion For Wellness?

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More Videos from Wendy C 7 videos in this series

Wendy explains how alopecia helped her develop a passion for wellness and shares why she covers her head in public.

Because of our alopecia we have to take care of ourselves on a much deeper level than the average person because it does affect our immune system.

So I started really looking into nutrition and exercise, and ironically I am very passionate about health and wellness and nutrition and exercise.

That’s a passion for me. I can light up a room and talk about it for hours.

Some women with alopecia go out into the community, out in public without anything covering the head, a hat, a wig, a scarf, a turban.

But for myself I may be not ready to do that and I have said to myself it’s okay if I am not ready to do that but I don’t mind opening the door to the UPS man because I have done that many times and I kind of go to the door and here I am, just a little bald head.

So I have this little message inside of my head that, here I am. It’s just a little bald head, it’s nothing to be afraid of.

So I tend to look at it like other people are afraid, their reaction is very hesitant, it’s like oh, you know.

And one of the biggest things that I find is that people, they tend to have that empathetic reaction of, oh, you are sick. You are going through chemotherapy.

You have to get past that. You have to get past that feeling of, people are automatically going to assume that you have cancer and you are going through chemotherapy.

And I went through an annoyance, a stage where I was annoyed. Why do these people look at me and ask me, “Oh how are you feeling today?”

And I just want to break out and throw my arms up in the air and say,
“Look at me, look how healthy I am,” because basically people with alopecia, we are healthy individuals.

We do have compromised immune systems. However, that’s why we have to take care of ourselves that little bit more. It’s a movement out there in the world of empowering ourselves and everybody is at a different level at a different time.

So I have just gone through this life with alopecia being more aware of the people in the world and how they perceive me.

But don’t let it deter you from living your life to the fullest. There are so many wonderful things out there and having a cute little bald head is okay.

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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 - 6:56am
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