Widower Brings Writer Back to His Senses

Sometimes you need a Frank Bierman to remind you what’s important.

Upon arriving at work one day last week, I found Frank Bierman’s name among my telephone messages. I didn’t know him; I planned to return his call after that day’s column was completed. But Bierman called me again, before I was off deadline.

You try to be polite, of course. But you’re thinking: Please let this guy be quick and to the point so I can get back to work. In this case, Bierman mentioned some obscure disease I’d never heard of. He thought maybe I could pass along some information about it in my column.

Bierman, 68, from San Juan Capistrano, didn’t know anything about my deadline, naturally, or that I was running behind. He seemed to be a nice man, but before he could go into detail, I cut him short. I suggested he send me some material on it.

“I just thought I could be of help to others,” Bierman said. “My wife died of this disease. We buried her yesterday.”

Suddenly you wonder what was so all-fired important about a deadline. We buried her yesterday.

I owe Frank Bierman for reminding me why I wanted to be a columnist in the first place. But my debt to Bierman isn’t why I want to pass along his message. It’s because some people don’t learn about this chronic disease until too late.

It’s called scleroderma, which means “hard skin.” The skin becomes brick-hard, and joints and internal organs can become so painful from swelling that just walking and breathing are almost impossible.

It’s more common than muscular dystrophy or multiple sclerosis; it just has less public awareness, I’ve since learned. The Biermans had certainly never heard of it.

Marcella Bierman, 74 when she died, had always been active. The Biermans, married 37 years, had first met on a tennis court. Outdoor sports like tennis and badminton were a big part of their lives, as well as long walks on the beach.

Three years ago, Marcella Bierman became feverish after just a slight bump showed on her forehead. She became so ill that the couple had to return early from a vacation. As Marcella Bierman’s condition worsened, her husband estimates they eventually traveled more than 2,000 miles within California just trying out new doctors. For much of that time, doctors didn’t even know what she had.

That’s part of Bierman’s message: So little is known about scleroderma that some rheumatologists can’t even properly diagnose it. But you can learn more through the Scleroderma Foundation, based in Watsonville, Calif., at (800) 722-HOPE. You can also write to the Scleroderma Research Foundation, 2320 Bath St., Suite 315, Santa Barbara, CA 93105 (phone [805] 563-9133).

At his wife’s funeral last week, Bierman handed out literature on the subject to those in attendance. “‘If it can be detected early, you have a much better chance of success in treating it,” he said. The disease’s cause is unknown.

Scleroderma Foundation Executive Director Robert Riggs told me that about 80% of those who suffer the disease are women. His foundation concentrates on public awareness, research, and helping with support groups.

It turns out there is a new group that just started in Orange County this year. It was organized by Daniel Lynch of Newport Beach, whose wife, Debbie, has scleroderma. The group meets monthly at the Irvine Medical Center, and Debbie Lynch said she and her husband welcome anyone to call them for more information at (714) 721-5746.

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Back in Business: In late January, I wrote about longtime public defender Ronald Y. Butler and his battle with throat and tongue cancer. He was about to head into a series of chemotherapy and radiation treatments. His prospects, he was told, were grim. Those treatments were followed by neck surgery July 31.

The other day I attended a meeting with Deputy Public Defender Bernadette Cemore and asked if she knew how Butler was doing.

“Why don’t you call him? He’s back at the office,” she said.

Butler went back to work two weeks ago, handling administrative duties five days a week. “I guess I’m a miracle,” he told me on Tuesday with a chuckle.

But Butler also said he’s ready to think about retirement--probably at the time of his 30th anniversary as a public defender next March.

Tracey Butler, his wife, said: “It’s been a long journey since January. I told him at one point, ‘Only a public defender could go through this.’ ”

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Wrap-Up: After that January column on Butler, one of his former deputies, noted Orange County defense attorney William J. Kopeny, wrote me a moving tribute to his old boss. Last week Kopeny and I talked on another subject. He told me about another disease that needs more public awareness--a rare heart/lung disease called primary pulmonary hypertension. It results in ultra high pressure on the blood vessels.

Kopeny’s sister, Betty Lou Wojciechowski of Rancho Santa Margarita, is vice president of a national group attempting to educate the public about it. It’s a disease that has dominated her life. Her son, Matthew, died from it just before his 5th birthday in 1983.

“We thought we were safe because we were told it would almost certainly never strike the same family twice,” she said.

But in 1994, her husband, Jerry, was diagnosed with the same disease. He’s been under daily treatment since then that requires Betty Lou to mix medicines for him every 24 hours and inject them into his system. After Jerry Wojciechowski’s diagnosis, the couple had their other three children tested. Only one of the three, their oldest son, Michael, showed any signs at all. Medications for Michael seemed to keep it under control.

But last week, after just a brief illness that led to pneumonia, Michael Wojciechowski died of primary pulmonary hypertension at the age of 23.

This week happens to be the national awareness week set up by the Pulmonary Hypertension Assn. To help people learn more about doctors and support groups, Betty Lou Wojciechowski has asked me to publish the group’s toll-free number: (800) 748-7274.

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Jerry Hicks’ column appears Tuesday, Thursday and Saturday. Readers may reach Hicks by calling the Times Orange County Edition at (714) 966-7823 or by fax to (714) 966-7711, or e-mail to jerry.hicks@latimes.com