Coping With Lupus New center to assist the afflicted

By GREG WILSON, New York Daily News April 5, 2001

When test results showed Maggie Luciano had lupus, she knew what to expect — after all, her sister has it and their father died of complications from the debilitating disease.

That knowledge didn't make the ensuing 11 years any easier for Luciano, 43.

But knowing a new office has been established in the Bronx to coordinate the resources of several health care and social service entities in the battle against the incurable disease helps.

"People don't know about lupus," said Luciano, a full-time volunteer with the S.L.E. Foundation, which helps sufferers and advocates research.

"I tell people they have to get tested, and if they have it, they have to stay out of the sun and see a doctor."

Luciano, who calls herself and fellow sufferers "Lupians," was on hand recently as officials from the East Harlem Lupus Cooperative announced the opening of an office at 1463 Southern Blvd.

"This is a disease for which minority women are particularly at risk," said Shira Orenstein, director of programs for the S.L.E. Foundation. "Since lupus primarily strikes in the childbearing years, the program helps not just patients but their families as well."

Lupus is a disorder that causes the immune system to produce antibodies that attack tissue and organs. It usually strikes women between the ages of 15 and 44, and symptoms include fatigue, rashes, swollen joints, chest pain and hair loss. Eventually, it can lead to paralysis and death.

Ninety percent of the nation's two million lupus sufferers are women, but its victims also include such famous men as CBS newsman Charles Kuralt and former Yankees outfielder Tim Raines.

The risk for minority women is greater, and as many as one in 250 African-American women will get the disease. Hispanic women also have a higher risk than whites.

The Harlem office, which opened in 1998, has already helped more than 3,000 people, according to coordinator Pedro Santiago.

He will also coordinate the South Bronx cooperative, which will be boosted by the resources of Montefiore Hospital, the Bronx Urban Health Plan and the S.L.E. Foundation.

"When we came to Harlem, lupus was a great secret," said Santiago. "Some people weren't being treated at all, and others were being treated mistakenly for other disorders. And timely diagnosis is critical to keeping this difficult and dangerous disease under control."

Santiago said the Bronx office will soon be reaching out to the community to help people get tested and educate victims about living with the disease.

Luciano said her husband, Charles Gonzalez, and their 5-year-old son, Justin, help her cope with the disease that could kill her.

"I'm in and out of the hospital," Luciano said. "People see me and don't see any physical characteristics of it, and they think I'm okay. But that's just the way it is with lupus."

Gonzalez said he feels helpless against the disease.

"There's not much you can do," Gonzalez said. "You never know when it's her time. Lupians die at all different ages."

What do you think? Post your comments on our Forums.

-- Lars (larsguy@yahoo.com), April 05, 2001

Answers

Most auto-immune diseases affect women more frequently than men. Another auto-immune disease,MS, is 2:1. Lupus is 9:1. I'd think that this would provide an insight to these diseases, along the lines of hormones, but it's not that simple.

Ethnicity is also a factor in MS but in the opposite direction to Lupus. Caucasians are twice as likely to acquire MS as are those of black African heritage altho the sexual bias is the same for black and white.

Go figure.

-- Lars (larsguy@yahoo.com), April 05, 2001.

How about a copy and paste on "Coping with loopies"?

-- (nemesis@awol.com), April 05, 2001.

Or maybe "Coping with Slurpies"

-- (nemesis@awol.com), April 05, 2001.

>>But knowing a new office has been established in the Bronx to coordinate the resources of several health care and social service entities in the battle against the incurable disease helps.

Bet Bush Lite cuts funding for this one too.

-- (aren't y@proud.lars), April 05, 2001.

Geographic distribution of MS: MS

Although I remember it is most common amongst Central Europeans.

Best Wishes,,,,

Z

-- Z1X4Y7 (Z1X4Y7@aol.com), April 05, 2001.

Z--

You probably know that there are many odd correlations for MS. Just a few---lattitude, ethnicity, gender, genetic predisposition, clusters (environmental?), even season of birth.

-- Lars (larsguy@yahoo.com), April 06, 2001.

I have a friend who thought she might have Lupus. She was one of those "bubbly" people...always had tons of energy, worked 10 hours on the job, went home to spend another 5 hours or so on political and human rights activities, traveled a lot, played music with a group, etc. We both worked at the same client site as contractors for seven years. This fear of Lupus came in that seventh year.

As contractors, we received no benefits. I went without health insurance, but I'm sure she had some independent insurance at the time. She started losing energy inexplainably, and finally went to a doctor. The doctor ran test after test and didn't know quite what to tell her, finally saying, "I don't want to scare you, but you COULD have Lupus. If you DO, I'm not going to include it in your record, because you'll never be accepted by an insurance carrier again." It was a LONG, scary period in her life. She had to drop all her outside activities and concentrate her energy on just making a living.

I left that contract for a more exciting one after the 7th year, and we fell out of touch for a few years. Whatever she had, she got over it. She's back in a music group, has [for the first time in her life actually signed ON with a contracting firm], has insurance, a good job, and a full life again. Maybe it was menopause that temporarily slowed her down.

-- Anita (Anita_S3@hotmail.com), April 06, 2001.