According to latest figures, somewhere in the region of 100 persons in Bermuda suffer with Lupus, but only ten per cent of them are members of the Lupus Association of Bermuda.

It is worrying to the president of the Association, Margaret Wade, herself a Lupus patient for 11 years. She knows that persons inflicted with the illness do not have to suffer alone, that there are others in the community willing to share their own experiences and offer support.

"It is quite concerning to me, not only as president but also as a sufferer," said Mrs. Wade of the reluctance of persons to come forward.

"The association's aim is to educate the public, as well as the patients, on Lupus," said Mrs. Wade.

"At the moment we have about 100 persons with Lupus in Bermuda, with maybe about 70 being treated in Bermuda, but only about ten per cent who are members of the Lupus Association.

"I don't know if it's their pride or just lack of support that stops them from coming forward, but it is a big concern. The support that I got, not just from the association but family members, was part of the healing process. Right now I consider myself in remission, but at any given time you can have a flare."

October is Lupus Awareness Month worldwide, with the Lupus Association of Bermuda an associated member of the Lupus Foundation of America. Its chief goals are to offer support to Lupus patients and their families, increase public awareness about Lupus, provide free literature and raise funds for education and research.

The local association kicked off their campaign with a prayer breakfast recently at the Bermuda Underwater Exploration Institute where Dr. Wilbert Warner, the guest speaker, shared latest information on the disease. Mrs. Wade has been president of the Lupus Association for two-and-a-half years but a member since 1993, three years after she was diagnosed.

Many new sufferers of Lupus may have a difficult time dealing with having the disease, thus their reason for not joining the association.

"Lupus is like a bad word, even in some of our literature there are questions asked like 'is Lupus like AIDS?'," she said.

"Even though I was introduced to the association it took me three years to get there. It's just making that step to do anything, really."

Information on Lupus is available from the General Post Office, and those seeking additional information can call 234-1080 or 293-0756.

"With what I went through in my first few years I would rather catch someone before they go through those stages," said the president. "Depression is one of the biggest things, and with depression comes anger and suicidal thoughts. That's from experience, but I hope I can reach someone before they get to that point and let them know they can have long life.

"Because I didn't have anyone to counsel me, I was only thinking about short time living and started to think suicidal. We are also concerned about family members being supportive to the sufferers."

Mrs. Wade has made some changes to her life and is now more able to deal with her own illness as well as be a source of support for others. "Accepting Christ was the greatest step I could have ever made," she says.

"Even though I was going through flare-ups from year to year, I happened to deal with it better in my mind."

When she was diagnosed with the illness, Mrs. Wade was working outdoors, delivering mail for the Post Office. Prolonged exposure to heat is one of the things Lupus sufferers must avoid and now Mrs. Wade works indoors at the post office.

"It's most important that we wear a proper sun screen at all times, winter and summer, on whatever parts of the body are exposed," warned Mrs. Wade who suffers with discoid lupus which affects the skin.

"You shouldn't be directly in the heat at all during the summer time."

The symptoms include having a butterfly rash, swelling of the joints, aches, feeling fatigued and rawness in the mouth. There is no known cause or cure.

"You really can't pinpoint what causes Lupus," said the president.

"I just woke up one morning and was feeling stiff, and it continued each day so I knew it was something more than just that. I kept going to the doctor on a regular basis until they decided to hospitalise me.

"It was three months before they diagnosed me. Normally it takes that long anyhow, because they look at so many signs and symptoms before they can diagnose you."

People have died as a result of complications from lupus, but accurate figures are not possible because those suffering with the illness don't necessarily join the association.

"That's a concern," says Mrs. Wade.

"With us having the association and not knowing of someone until after they have passed is not a good feeling. The majority are black, women and the majority get it between teenage years and late 20s. You can have it and not know it.

"We say black women but I went to a conference in 1994 and there were quite a lot of white people there, both men and women."

Lupus is often called a 'women's disease' despite the fact that many men are also affected. Lupus can occur at any age and in either sex, although it occurs ten to 15 times more frequently among adult females than among adult males.

The symptoms of the disease are the same in men and women. People of African, American Indian and Asian origin are thought to develop the disease more frequently than Caucasians, but the studies that led to that result are small and need corroboration.

More than 16,000 Americans develop Lupus each year. It is estimated that 500,000 Americans have been diagnosed with Lupus.

*The Lupus Association of Bermuda will hold a timed walk on Saturday, October 27 starting at 7.30 a.m. Participants should meet at Peace Lutheran Church parking lot in Paget for the one hour walk to Warwick and back. There is a registration fee of $10. Call 234-8544, 295-4487 or 234-1080 for a pledge sheet.