Dean Kahn

Living with alopecia: Skagit woman faces baldness head-on with new book

Deeann Graham, of Sedro-Woolley, compiled the personal stories of more than 75 people who suffer hair loss in a booked called "Head-On: Stories of Alopecia."
Deeann Graham, of Sedro-Woolley, compiled the personal stories of more than 75 people who suffer hair loss in a booked called "Head-On: Stories of Alopecia." The Bellingham Herald

Deeann Graham is fine with the idea of wearing a head scarf when she goes to her daughter’s school, if that’s what her daughter wants.

While Graham no longer worries about what people think of her baldness, she does pay attention to her daughter’s peace of mind.

After coping with erratic hair loss ever since she was a child, Graham, 43, is now at ease being in public without a hat or scarf to cover her hairless scalp.

Graham has alopecia areata, a disease in which her immune system attacks her hair follicles. She has just published “Head-On: Stories of Alopecia,” a collection of stories by women, men, girls and boys about their lives with alopecia.

She hopes the book will remind people with alopecia that they are far from alone as they cope with the disease. She also hopes the book will make the public more familiar with the disease, and thus more accepting of people who have it.

“It’s about raising awareness,” Graham said.

Alopecia isn’t life-threatening, but it is life-altering. In a world in which appearance can play a big role in how people view themselves, and how people view others, having patchy to no hair can leave a person feeling lonely, and sometimes the subject of ridicule.

It can take people years to accept their hair loss as inconsequential to who they fully are as human beings. It’s a challenge, but one that can leave the person stronger and happier in the end, with the inner beauty that strength and happiness supports.

“I’ve been able to connect with an authentic part of myself” Graham said. “I realize this is who I am.”

Think of 100 people you know. Odds are, two of them will experience alopecia areata. For many people, that means small round patches of their hair will fall out. The patches might multiply, or grow new hair. Or not.

Some people lose all of their scalp hair. That’s called alopecia totalis.

Fewer people lose all of their scalp and body hair. That’s called alopecia universalis. That’s what Graham has.

Accepting baldness

Graham lives in Skagit Valley with her husband, 15-year-old daughter and 11-year-old son. Until recently, she worked at The Abbey Garden Tea Room in Fairhaven.

When I met her last week for coffee and a talk, she mentioned there was a fine fuzz on her scalp, although it wasn’t readily apparent. She has short eyelashes. She penciled in her eyebrows but has some eyebrow hair.

That’s the way it is with alopecia. It’s unpredictable. Graham’s experience is a good example of that.

Her moment of discovery came when she was 7 and living in Southern California. Her mother, busy combing Deeann’s hair after a bath, paused when she founded a small bald spot on the right side of her daughter’s head. By third grade, Graham was nearly bald.

Graham had already been diagnosed with Type I (juvenile) diabetes, so she was accustomed to feeling separate from the crowd. She received insulin injections while her classmates were at recess.

As a child, she got a custom-made wig, but it took a group of friends at school to run interference so others wouldn’t yank off her wig.

Then, during the summer before eighth grade, her hair suddenly grew back. Soon after, her family moved to Woodinville, where Graham attended high school.

However patches of baldness reappeared now and then, and her hair started falling out again when she was a young adult with a job and a boyfriend.

Alopecia treatments work for some people, but are less successful for people with total hair loss. Graham tried steroid injections once, but it didn’t help and she decided she would no longer put her body at risk just because her hair was gone.

After she married and started her family, the top two-thirds of her hair fell out. Then it regrew. Then it fell out again. She wore a wig, then accepted her husband’s suggestion that she shave her head.

“I was now completely bald, and I can truthfully say I was thankful to be off that crazy roller coaster,” she writes in one chapter in the book.

Graham knows that finding peace with baldness can take time. Now she’s comfortable whether she’s wearing a wig, a hat, a scarf or nothing at all on her head.

“I like the idea of choices,” she said.

Reach Dean Kahn at 360-715-2291 or dean.kahn@bellinghamherald.com. Read his columns at bellinghamherald.com/dean-kahn.

Stories of alopecia

“Head-On: Stories of Alopecia,” a collection of more than 75 personal accounts by people diagnosed with alopecia areata, was compiled by Skagit County resident Deeann Graham.

The 215-page, large-format paperback retails for $32. It can be ordered at headonpublishing.com and is available at Village Books.

ABCs of alopecia

What is alopecia areata? It’s a disease in which a person’s immune system attacks healthy hair follicles. That can result in the loss of hair, often small, round patches on the scalp.

What is alopecia totalis? Loss of all scalp hair.

What is alopecia universalis? Loss of scalp and body hair.

Is alopecia life-threatening? No.

Who gets alopecia? The disease affects male and females of all ages. About 2 percent of people have or will experience the disease.

Can someone’s hair grow back? Yes, and it can fall out again, in unpredictable timing and patterns.

Is there a cure? Some treatments work for some people, but there is no reliable cure for everyone.

Is alopecia genetic? Hereditary plays a role, especially in families with other kinds of autoimmune diseases.

alopecia resources

National Alopecia Areata Foundation: naaf.org, 415-472-3780

Children’s Alopecia Project: childrensalopeciaproject.org, 610-468-1011

Alopecia World networking site: alopeciaworld.com

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