DENNIS ODA / DODA@STARBULLETIN.COM Cheryl Ann Jong, 39, left, president of the Hawaii chapter of the Lupus Foundation of America, showed on Wednesday some of the medications she has to take daily for lupus. She said she was born with the disease but was not diagnosed until age 20. Tracy Okubo, right, administrative assistant to state Human Services Director Lillian Koller, also has lupus. Okubo is on the board of directors of the Hawaii chapter.

Living with lupus

The disease affects an estimated 7,000 to 10,000 in Hawaii

CHERYL ANN JONG, Tracy H. Okubo and Rep. Mark Moses are among islanders who struggle with lupus, one of the most perplexing, severe and sometimes life-threatening diseases.

The little-known chronic autoimmune disease causes the immune system to attack the body's own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood or skin.

It is called a "woman's disease" because it is more frequent among women, but many men also are affected.

Based on national statistics, Jong said an estimated 7,000 to 10,000 Hawaii residents have lupus.

"Realistically, it is probably a lot more because of our ethnic diversity," she said, explaining the disease is two to three times more common among native Hawaiians, Polynesians, Asians, African Americans, Hispanics and American Indians.

With early detection and treatment, most patients can have a "somewhat normal" lifestyle, she said.

Jong, 39, said she had three ministrokes, asthma, an irregular heartbeat and arthritis, and had lost part of her lung capacity by the age of 15. Yet she was not diagnosed with lupus until age 20.

Okubo, administrative assistant to state Human Services Director Lillian Koller, said she was diagnosed with lupus at age 15.

She had red splotches on her legs, and they were always sore and painful, which she attributed to cheerleading, water polo and playing in the marching band, she said.

She was lucky, she said, because a blood test technician who had a sister with lupus noticed she had the same butterfly-shaped rash across her cheeks and nose.

Because lupus patients are sensitive to sun and light, she had to give up her outdoor activities.

Okubo, who was 27 last Friday, said she also has fibromyalgia and rheumatoid arthritis. She was on medications initially but has been in remission for 10 years, she said.

She has vision and kidney problems and other long-term effects from the medication but takes no medicine now.

She works out at the gym three times a week, does light weight exercises and tries to eat healthy. Her running these days is tied to her bid for the 25th District (Tantalus-Makiki) House seat on the Republican ticket.

Jong is trying to make people more aware of lupus, operating from her Alewa Place home and a Lupus Foundation office.

Unlike Okubo, Jong takes a lot of medicine and has days when she "crashes." She was on intravenous chemotherapy, which she said damages the liver. Her prescriptions can run up to $300 to $400 a month.

Jong did not know for 12 years that her pain could be controlled, but it has been reduced 50 percent with medicine, she said. "Other people are way worse than I am. Some can't get out of bed in the morning."

There is no new specific drug for lupus, Jong said. "For the first time in 40 years, they're exploring new opportunities for drug treatments."

Moses (R, Makakilo-Kapolei) said his earliest symptoms might have appeared in 1983, when he was a naval flight officer with the Marine Corps, stationed at Camp Smith.

He broke out with what doctors said was a severe case of poison oak. "But there is no poison oak in Hawaii. ... It lasted a few weeks," he said. "I might have had other symptoms, but I'm a big, tough Marine," so he did not pay any attention when he had fatigue, pain and some jaw problems.

About 1988, "it got real bad," he said. "I had all kinds of symptoms."

Back then, 14 criteria were used to diagnose lupus, and he had 12 of them, Moses said. Now there are 11.

He said a doctor at the Naval Medical Center in Bethesda, Md., suggested he take medical leave and enjoy life. When Moses asked what he was trying to say, he said the doctor told him he had a maximum of five years to live.

Moses, 58, said he retired from the military but his service was extended, without flying duties, to 1991 because of the Gulf War. Returning home, he worked as a civilian at the Pacific Missile Range, then got involved in community affairs.

He said he "wanted to retire and go fishing" but decided to run for the House in 1996.

He broke his hip several years ago, and it had to be screwed together, forcing him to work and campaign in a wheelchair, on crutches and with a cane. He had hip replacement surgery in 2003.

Moses continues to speak about lupus at events and on the House floor.

"Whenever I have aches and pain, I think maybe it's age," he said. "Pain never bothers me much ... maybe it's Marine Corps training. I have very, very high tolerance for pain."