By Howard Goldstein
Yet, lupus remains one of the least known and misunderstood of chronic diseases, even though an estimated 1.4 to two million Americans suffer from Systemic Lupus Erythemotosus (SLE), and an unknown number from two other forms of the disease.
The Lupus Alliance of Bellmore is a non-profit organization dedicated to helping lupus patients on Long Island and the five boroughs. To raise funds for continued efforts to help lupus sufferers and their families, the Lupus Alliance is sponsoring two major fund-raising events, a motorcycle ride and a walk-a-thon, in September and October.
Lupus is a chronic inflammatory disease of the immune system. The body produces antibodies that attack healthy tissues rather than invasive microbes. In its most-serious forms, the kidneys, heart and nervous system may be affected.
Overwhelming fatigue, fevers, pain and an inability to move normally are common among lupus patients. Pleurisy, life-threatening photosensitivity, rashes, arthritis, seizures and mouth ulcers occur, as well.
Most lupus sufferers are young women. Males can have lupus, but women patients outnumber men by 10 to one. Lupus is most prevalent in African Americans, Latinos and Native Americans.
But lupus is also invisible. In most cases, there are no external signs, and because lupus is a disease of dormancy followed by remissions of illness, a lupus sufferer may show no symptoms during a "healthy" period.
"Lupus can be extremely debilitating," said Joann Quinn, executive director of the Lupus Alliance .
"It's devastating for families, career, the home, the children...There are days when a sufferer literally cannot get out of bed. That's a problem if you have a 9-5 job. And because it's invisible, people unfamiliar with lupus often act like sufferers aren't really sick. "People with lupus have been accosted over having handicapped stickers, and since most sufferers are young women, people often just assume they've gained weight [a byproduct of some types of lupus medication]."
Christine, a 25-year-old Valley Stream resident, was finally diagnosed with lupus after many years of misdiagnoses, doctors telling her she was "tired," and several lengthy and expensive tests, one in a facility as far away as Minnesota.
At age 15, Christine was on the road to becoming a professional dancer as a student of High School of Performing Arts in New York City and a Martha Graham Dance Company Scholarship recipient.
As a result of her diagnosis with lupus, Christine was forced to stop dancing. She also had to leave college, and has been laid off from her job as marketing manager from a large company because of her extended illness leaves.
She is now forced to apply for state disability.
"This happens to so many young women. And so many people go undetected. Awareness has gotten better, but there is still very much to do," said Christine.
The Lupus Alliance sponsors education days and programs, provides doctor referrals in Long Island and New York City, answers about 12,000 calls per year, maintains a trained staff and social workers, sponsors activities for families with a lupus sufferer, supplies up-to-date information about the disease and its treatment, and provides support and educational groups. Christine's mother and fianc
