In a life full of curve balls, going bald is a top fear among men. But, the stigma for bald women is even worse.
It’s a reality for about 6.6 million Americans living with a disorder called alopecia.
If you don’t know what alopecia is, you’re not alone. Alopecia is an autoimmune disorder where the body attacks its hair follicles, causing hair to fall out, sometimes in round circular patches.
Three types of alopecia:
- Alopecia areata: Sudden hair loss that starts with one or more circular bald patches that may overlap.
- Alopecia totalis: A more advanced form of alopecia areata which results in total loss of all hair on the scalp.
- Alopecia Universalis: Alopecia universalis is the most advanced form of alopecia areata which results in total loss of all hair on the body, including eyelashes and eyebrows.
There are more types of alopecia that can be seen here.
Lisa Torrey first started to lose her hair when she was 18. Back then, she tried to hide it from those closest to her.
"Mostly socially I guess. Just trying to hide at home,” explained Torrey.
Torrey’s condition progressed from alopecia areata to totalis. Eventually all the hair on her head, face and body fell out.
"I have no eyebrows or eyelashes. No hair at all,” said Torrey.
Torrey said when she was a teenager the “unknowns” made it a very scary situation.
"You almost feel like you're going to die because you don't know. It just gets worse and worse every day,” said Torrey. "Our hair is tied to our identity so closely and when we lose our hair as women we feel ashamed.”
Those feelings can be common, according to Robbin Scholfield who opened up Bravada’s Wig Store in Overland Park about a year ago.
“One of the things people hear whether they're going through cancer treatment or alopecia - it's just hair no big deal. But it is a big deal,” explained Scholfield.
That’s something Torrey can relate to. But after years, she no longer hides her alopecia.
She’s a nurse in Lee’s Summit, runs and swims, even recently finishing a triathalon.
A lot of the comfort came when she discovered alopecia caps.
“They are made internally with silicone and grippy material that really hug the head, making it more comfortable to do athletic activities and every day life,” said Scholfield.
Bravada’s is one of the few places in the metro that carries such a product.
“It has changed my life,” said Torrey, who is now able to do the things she loves the most.
Scholfield says she is seeing more people with alopecia come in to be fitted for a wig or hair piece than ever before.
"A young lady with alopecia universalis says at her school alone there are three people with alopecia right now,” explained Scholfield.
For them, social support is crucial. That is why Torrey created an alopecia support group.
“There are people new in their journey wondering, ‘Is this normal? Is that normal? Why am I so sad?’ We can say, we’ve been there. It gets better,” said Torrey.
There is no cure for alopecia but hair can grow back in some cases and types, even after years of extensive hair loss. But it will never grow back fully.
Cortisone injections are one type of treatment, but that and several others did not work for Torrey.
The next support group meets on March 7 at 6 p.m. at Bravada’s off Metcalf Avenue in Overland Park.
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Belinda Post can be reached at belinda.post@kshb.com.
