LUPUS SURVIVORS TELL HOW THEY COPE IN 'PORTRAITS OF SUCCESS'.

Byline: Valerie Kuklenski

Staff Writer

Barbara De Witt, former Daily News fashion editor, has a light-blue hoodie jacket with the words "lupus survivor" embroidered on the back.

"When I wear it, I get stopped by strangers," she said. "I've been chased down by men who tap me on the shoulder and say, 'Tell me about lupus. My wife was just diagnosed.' "

De Witt admits she knew nothing of the disease herself in August 1999 when her initial symptoms -- severe breathing difficulty and edema -- required a trip to the emergency room and hospitalization. Blood tests conducted by a specialist disclosed the cause.

"They closed the door and the nurse put her arm around me, and (the doctor) said: 'The good news is you don't have cancer. The bad news is you have lupus.'

"And I said, 'What the hell is lupus?' "

It's an autoimmune disease that triggers the body to destroy its own bones, organs, muscle tissue and blood as if they are harmful invaders. The Lupus Foundation of America estimates that 1.5 million to 2 million Americans have a form of it, about 90 percent of them women. There is no cure, only the hope of remission and a host of medications and surgical procedures to address symptoms.

De Witt says she spends $1,400 a month on 31 prescriptions -- some to address lupus conditions and others to mitigate the harmful effects of the strong drugs -- and goes three times a week to UCLA Medical Center for tests, treatments and doctor visits.

Even with a condition that controls so much of her daily life, De Witt retains her optimism. That outlook that compels her to wear her "survivor" jacket proudly has driven her to write "Portraits of Success," what she calls the first book on lupus told from the view of several patients.

The collection of 29 first-person accounts and profiles includes L.A. newscaster Kathy Vara, movie producer Lauren Shuler Donner and former "Waltons" star Mary Elizabeth McDonough.

"I wanted to know how the real people, the patients, felt," De Witt said, having read the handful of books on lupus written by physicians.

For each profile, she asked her subjects about the challenges they face and the advice they would give another patient. While doctors' books focus on symptoms and treatments, "Portraits" looks at career adjustments, non-medical courses of action such as diet and acupuncture, leaning on family and friends, and making the most of the good days.

They compare their ailments -- joint pain, rashes and fatigue are common, and some suffer from lung problems, nerve damage, fragile bones, kidney failure and eye diseases -- and the ways they go about living. With sun sensitivity a major concern, De Witt says she has taken to pruning her rose bushes at night under the glow of floodlights.

"Going out and talking to all these people, and them sharing all their stories, it was fascinating," De Witt said. "It was educational for me. It made me feel less sorry for myself because there were some who were so much worse than I was.

"These people in my book are all people who somehow accepted it and moved on, and tried to do something else to make their life worthwhile while dealing with it."

One young mother addresses how to teach your children about lupus so they won't be frightened by it. A teenager cautions parents against coddling a young lupus patient too much.

"I definitely wanted the book to be truthful, but positive," De Witt said.

Valerie Kuklenski, [phone]

[e-mail]

BOOK SIGNING

What: Barbara De Witt will discuss and sign "Portraits of Success."

When/where: 7 tonight at the Santa Monica Library, 601 Santa Monica Blvd.; April 18 at Borders Books in Costa Mesa; April 29 at the Los Angeles Times Festival of Books.

What else: The book also is available for $19.95 through www.lupusinternational.com, the patient-support foundation benefiting from sales.

CAPTION(S):

2 photos

Photo:

(1) In "Portraits of Success," written by lupus survivor Barbara De Witt, below, patients describe their challenges and offer advice for others. The Lupus Foundation of America estimates 1.5 million to 2 million Americans have a form of lupus, about 90 percent of them women.

(2) no caption (Barbara DeWitt)