alopecia universalis

Written by Mary

Hi everyone,

I’ve just joined and I want to share my alopecia journey with you. This may be longer than it’s supposed to be, but I hope my experiences will help someone. If you want to put a face and voice to this narrative, please check out my YouTube video entitled “Alternatives to wearing a wig”.

I had patchy alopecia for 7 years, beginning out of the blue in my late forties. The round spots were always confined to the back or sides of my head, and were easily hidden under my thick brown hair. The frequency of the spots increased in the last few years, but they always filled in after monthly cortisone injections. My daily routine was checking my scalp in the mirror for new spots and for the status of old ones, and applying cortisone cream. I always worried about the spots moving to places on my head that would show. But, after so many years, I also sort of figured I’d never lose all my hair. Wrong.

Exactly a year ago, my hair loss began to rapidly progress. New spots appeared on top where there had never been any; old ones enlarged to take up most of my scalp and merged with others. I obsessed about losing it all, and was often depressed and crying. By January 2008, I had as much bare scalp as I had hair, and the bald areas were too extensive for cortisone injections. We took some final photos the night before I shaved my head on January 30, 2008. I saved some pieces of my hair. The photo you see was taken right after my head was shaved, and still shows stubble and my real eyebrows and lashes. I have no eye makeup on in this photo; my eyes were dark and my eyebrows very distinctive.

I felt better immediately! No more scooping up hair from the floor every day. No more examining my head to check the bald areas. No more crying over the spreading bald spots. And, it was much more comfortable under a wig or scarf than when I had the patches of hair. Shaving it all off gave me a feeling of control.

Via a local support group, I heard about a casting call for “Shear Genius” on Bravo, and was one of 8 bald women with alopecia featured on an episode that was filmed the end of March. At the taping, I still had my eyebrows and lashes, but they were gone by mid-April. The show aired July 23, and many times after that. (You can see the whole episode on YouTube under “Shear Genius 2 Episode 5”.) It was a great experience meeting the other women, all of whom had been bald for many years. I’ll probably never wear the wig from the show – way too heavy and thick, and I picked a color that wasn’t a good choice. [click to continue…]


Tina Turner | Women's Hair Loss ProjectI stumbled across something online today that said that Tina Turner actually suffers with alopecia universalis. I’m not sure if thats true or not, as many African American women wear wigs and hair weaves. Most often I think it is for style, but who knows this could be why I have never actually have seen a picture of her without her wig. She always looks so fabulous, the wigs just add to her beauty.

But after reading that I started wondering about the other famous women who are known to wear wigs all the time. Cher and Dolly Parton are the ones that come to mind instantly. Is it for fashion and style or is it because they are also losing or have lost their hair. I guess my personal thought is that they most likely have some form of hair loss, whether it is alopecia areata, or just plain old androgenetic alopecia. I could be wrong, I don’t have any evidence to support that, but why else would you spend your whole life wearing a wig?

When you lose your hair I think you often look around for others who are experiencing the same condition, you just don’t want to feel alone. Maybe thats why I think they too have hair loss, it could just be my minds weak attempt to cope better by trying to lump their situation into the same category as mine… diagnosis hair loss.

I found an interesting article that was published back in 2003 titled, “Dolly Parton Unwigged? Never!” In the article Dolly Parton says she would never step outside the house without the wig and makeup, she joked, “unless my husband is dying of a heart attack, and even then I would think about it.” Funny.