Support group, lunch event assist women with hair loss

By: RUTH MARVIN WEBSTER - Staff Writer | Saturday, January 12, 2008 7:20 PM PST ∞

For years, Encinitas resident Linda Diller couldn't watch a shampoo commercial without dissolving into tears.

Diller, who has the rare auto-immune disease alopecia areata, began losing her hair in clumps when she was just a freshman in college. "I was 17 and we had to do tumbling, somersaults, in PE," she recalled. "I went down to the mat and when I put my head down and rolled on my side, I heard a loud ripping sound. I looked down and there was a huge patch on my hair left on the mat. It had broken off at the base."

While not a life-threatening disease, the effects of alopecia areata can be devastating socially and emotionally, particularly for women, whose hair has historically been linked with their sexuality and desirability.

"The psychology of it all can be overwhelming," said New Yorker Thea Cassin, founder and president of Bald Girls Do Lunch, a nonprofit organization that brings women with alopecia together for lunch, and will do so in Rancho Bernardo on Jan. 16. "You'd be surprised to know how many people have alopecia, and when you get together around the table for lunch it is really positive. People are relieved to know they are not alone and they can strategize with each other."

Losing one's hair
Many people experience hair loss at certain times in their lives and can relate to the fear of seeing a few strands of hair left behind in the sink or in a hairbrush.

Poor nutrition can be one culprit. For women, hormonal fluctuations, such as after childbirth or beginning birth control pills, are another. Some medications, such as certain antidepressants or others for gout, arthritis or heart problems, can cause temporary hair loss, as do chemotherapy and radiation treatments. Hair styling chemicals, when they are overused or misused, and scalp infections like ringworm can also lead to hair loss. But in these cases, the loss is usually temporary.

The medical term for hair loss is alopecia, and when that hair loss is permanent, it falls roughly into two categories: pattern baldness (androgenetic alopecia), which affects roughly one third of men and women, and alopecia areata (pronounced a-la-PEESH-a ah-ree-AT-a), an auto-immune disease without a cure, and without a known cause.

Medical researchers have found that in alopecia areata, white blood cells attack the rapidly growing cells in the hair follicles that make hair. The affected hair follicles become small and drastically slow down hair production. But since the stem cells that continually supply the follicle with new cells do not appear to be targeted, the follicle would seem to remain able to regrow hair.

And while there is neither a cure nor drugs approved for treatment, some people find that medications such as corticosteroid injections can help hair grow back, at least temporarily. Topical minoxidil (Rogaine, for men and women) is FDA approved for treating only pattern hair loss.

According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes for Health, alopecia areata affects an estimated 4 million Americans of both sexes and of all ages and ethnic backgrounds. It often begins in childhood; and if you have a close family member with the disease, your risk of developing it is only slightly increased. Overall, one in five people with the disease have a family member who has it as well.

'A wig abuser'
After her experience losing her hair during her freshman year in college, Diller went to a friend's home where they made an appointment with the family doctor for her. "He took one look at me and said, 'Within in three months, you'll be balder than a peeled egg.'"

Forty-plus years later, Diller, the youngest of three girls, said she has one sister with alopecia areata, and the other has eczema, another auto-immune disease. A couple of cousins also have alopecia areata. Her two children, Gigi, 32, and Josh, 29, have shown no sign of the disease. But, Diller said, she has known women who have chosen to have their tubes tied rather than risk having daughters who might be afflicted with alopecia.

Today, Diller's eyebrows and eyelashes are cosmetically tattooed on, and her synthetic wig, with its flecks of different colors and slight wave, looks completely natural. "Until I lost it, I had thick, naturally wavy blonde hair," she said. "Sometimes I think I mourn it."

She calls herself a "wig abuser" for the way she roughly handles her wigs. "I try to stick with one at a time ---- they last about three or four months, and the synthetics range between $125 and $300. But when I get home, the first thing I do is take it off. They're hot and tight and uncomfortable ... and you can't stand close to an oven or the bangs will get singed. Same thing with the eyelashes."

Diller said she plans to wear only a haku lei, a traditional Hawaiian head lei, to the Bald Girls luncheon next week, but doesn't usually go out without her wig because she feels that it might make her business clients uncomfortable. She owns and manages All the Best, a consulting company that helps seniors relocate.

Before she started the company, she said, she ran the local alopecia areata support group and volunteered at The Brighter Side, a Solana Beach shop supplying prosthetics and wigs for cancer survivors. She also owned her own wig shop on the Hawaiian island of Oahu, where she lived before moving to Encinitas 10 years ago.

"In Hawaii, I used to bring wigs to women in these little shanty houses who wouldn't go out of the house and who couldn't afford a wig. You should have seen how grateful they were."

Diller said she wishes she had more time to lobby for state legislation to make insurance companies cover the cost of wigs for women with alopecia areata. Minnesota, New Hampshire and Massachusetts have such laws, she said.

Supportive lunch
At the Bald Girls Do Lunch event, Diller expects that each woman will bring her own take on the disease. "It's like a 'Bob' convention," she said. "All those people who are named Bob are different, and just because they have the same name doesn't mean they have had the same experience being Bob. They bring their own personalities to it."

But she thinks that meeting others with the same affliction, to give support and exchange experiences, can be enormously helpful to many women. "One of the gifts that alopecia has given me is seeing the humor and being empathetic to others."

Cassin said that the luncheons are also an opportunity for many women who may shy away from a support group. "Women with alopecia areata have issues that are common and specific," she said in a telephone interview last week. How better to strategize than with other women over lunch? "This is not a pity party," she said.

At the lunch, the women can also discuss issues as whether to wear a wig, how to answer other people's questions, dealing with discrimination in the workplace, and even when and how to tell a partner with whom she may become intimate that she is bald. Indeed, said Diller, her bright blue eyes twinkling, "I would love to be able to talk about the romantic aspect."

Former Oceanside resident Jennifer Aguilar, 25, also has alopecia. Last year, the Chula Vista woman began losing her hair in two large spots, each about 5 centimeters in diameter.

"I looked every day in the mirror, every five minutes, and I just started crying. I was so sad and afraid and anxious," she said. "It was so emotional, but I told myself I just had to accept myself. There are two parts to alopecia, the physical and the emotional."

Aguilar said she went to five different doctors before finding one who prescribed a set of cortisone shots in the scalp over the course of two months. "I hated that I felt so powerless," she said. "The doctors would say it was not that important, just cover it up. They said it could be syphilis or anorexia, or that I was depressed or stressed. The doctors don't know how to explain it."

Within a month of beginning the cortisone, though, Aguilar said her hair started to grow back in the thin patches. "It's still shorter there, but right now I feel stable. The doctor said, 'You may lose it again, even in a year,' but I've decided not to worry too much about it. If it could happen, this time I am more prepared mentally," she said of the virtual certainty her hair loss will return.

Helpful thinking
Attending the local support group, the same one that Diller attended, she said, has been extremely helpful in dealing with her hair loss. So was speaking with Jessica Smith, the group's organizer, over the phone. "When I first called Jessica in August of last year, I told her, 'I have it too,' and I started to cry," she said. "I loved my hair. Alopecia is a disease that doesn't hurt, but it hurts emotionally."

Thea Cassin dealt with the trauma of losing all of her hair this way: "I decided I would educate myself and others," she said. "I was going to find the best make-up artists, research wig makers, and I made the decision that I would not let my hair loss keep me from doing anything I wanted to do."

The next time you encounter a "bad hair day," you might want to look at it the way Diller does:

"I don't play golf, but I like the analogy," she said. "It's like a guy, he has a handicap of 8 or something ---- anyway, now, his handicap is 12, or 14. It's getting worse and he's really unhappy because his handicap is slipping and his good golf game is something he has always relied on. You know, most of us, when we hear him complain, what would we say? 'What is this guy complaining about?' Twelve, 14, whatever ---- that's still good."

Contact staff writer Ruth Marvin Webster at (760) 740-3527 or rwebster@nctimes.com.

Fast Facts

Bald Girls Do Lunch Inc. brings women with alopecia areata, a hair-loss condition, together for the first time in San Diego. Founder and president, Thea Chassin, has organized lunches in cities across the country, including in Rancho Bernardo on Jan. 16.

Invitations and details are posted at www.baldgirlsdolunch.org.

Reservations are required. E-mail to info@baldgrisldolunch.org.

Alopecia Areata Support Group

Meetings are held at 6:30 p.m. every last Wednesday of odd-numbered months at the Mission Valley Branch Library, 2123 Fenton Parkway, San Diego, CA 92108. Contact Jessica Smith at (712) 310-0777 or visit www.alopeciaareatasandiego.org.