Closing The Door After 18 Years Of Service, Lupus Support Group Reaches Difficult Decision

The phone messages here stretch back 18 years, on inches of aging blue sheets that tell hundreds of stories.

“Has been diagnosed. Told ‘no’ by another.”

“15-year-old granddaughter has lupus.”

“Has lupus. Wants to know about a support group in the Tri-Cities.”

Members of the Greater Spokane chapter of the American Lupus Society have answered these phone calls and questions since 1979.

They have sent out thousands of packets of information. They have answered panicked telephone calls in the middle of the night from newly diagnosed patients. They have raised money for research.

Now, they are closing their doors.

“Our health just won’t take it any more,” said Arlene Barnes, 63, the group’s president for the past three years. “All of our board members are sick and very sick. It was hard. We struggled with the decision, sick for months.”

Lupus, the Latin word for wolf, was named by 19th century doctors who thought the butterfly-like rash that sometimes appears on victims’ faces resembled the bite of a wolf. It’s a mysterious ailment in which the body’s immune system becomes hyperactive for unknown reasons and attacks normal tissue.

The Spokane group’s demise leaves a hole in the support network for people suffering from lupus, although no one’s sure how large that hole will be. There wasn’t a lot of demand for the group’s work in recent years.

People weren’t showing up for meetings. The annual luncheon held every October to mark National Lupus Awareness Month was canceled last year, after only 36 people out of a mailing list of 950 said they would come.

There isn’t an easy explanation for why the group dwindled. Loyal members grew older, sicker. Some moved away. New members were difficult to attract.

“The last couple of years, there just didn’t seem to be a whole lot of interest,” Barnes said. “In our case, it was ‘been there, done that.’ There had been no new breakthroughs. They had heard it all. In fact, they had probably heard it up one side and down the other.”

The core group of volunteers who formed the chapter board fished for new board members. One woman stepped forward but then learned that she needed open heart surgery.

Aside from her, no one answered the group’s call.

“It’s like throwing a birthday party, and not having anybody show up,” said Jane Floyd, who writes the group’s quarterly newsletter, “The Courier.”

It wasn’t always that way.

Members of the core activist group refers to the ‘70s as the dark ages, when no one knew much about lupus, not them, not their doctors, not family members.

About 100 people responded to an organizational meeting for a local lupus chapter in the spring of 1979. In July, the group received its charter.

Marge Garrett, a one-woman lupus crusade who served as president of the group for about 15 years, ran the office out of her kitchen. It was moved to her Hillyard pastor’s office and then to the Lindaman Center for nonprofits at 315 W. Maxwell.

The group grew. In November 1985, the Spokane chapter hosted the first American Lupus Society annual meeting ever held outside Southern California.

“A lot of people became aware that we were not this flash in the pan,” Floyd said. “We took on a really big undertaking.”

Garrett, a national board member since 1980, got her own 1-800 number. She gave advice to people calling from nine states, at all hours of the day and night.

The chapter answering machine also lists the home phone numbers for Garrett and Barnes.

“Sometimes, they’d call after midnight,” Barnes said. “They’ve just been diagnosed, and they’re lying there. Or somebody’s lying there hurting, aching, and they think they’re going to go mad, and they just want to talk.”

Hundreds of people used to attend the October luncheons. One at Deaconess Medical Center was crammed with more than 200 people.

“People were spilling into the corridors,” Garrett said. “They were so hungry for information on lupus.”

Most of them didn’t know their disease for years. They just knew something was wrong. They were sensitive to the sun. Their joints hurt. They suffered liver problems, rashes and chronic pain.

They often were told the problems were in their heads. Some spent months in the hospital, more dead than alive. The word “lupus” was almost welcome, finally an explanation.

There are two main forms: discoid and systemic. Discoid lupus stays on the surface, producing red, scaly lesions on the skin.

Systemic lupus can attack any organ system in the body. It can turn on kidneys, the liver, the brain. It can attack the skin. It can be mild or life-threatening.

About 1.4 million to 2 million Americans - mostly women - suffer with the chronic disease, its flares and remissions.

“I’m sick that we’re not going to be here,” said Barnes, who wears an oxygen tube as permanent jewelry, not because of the lupus but because of a blood disorder. “We’re all sick about it. We know there is a need for this sort of thing here.”

The last straw for the group was probably 8 inches of paperwork. Last summer, the American Lupus Society decided to merge with the larger Lupus Foundation of America. It was simply too much to cut the red tape, considering the public’s lack of interest.

Five board members voted unanimously Jan. 10 to disband.

The doors will close at the end of March. Until then, the volunteers will work on a final project, to send boxes of lupus books to 60 libraries in the Inland Northwest. It will be their legacy to lupus patients in the area.

“I feel very good about how many people we helped,” Garrett said. “I don’t want this to end on a sad note. For all people on this board, we’ve done our best. And that’s been pretty good.”

, DataTimes ILLUSTRATION: Color Photo