DISABILITIES

HOMEPAGE www.danieljvance.com

By Daniel J. Vance


The Lupus Foundation of America website defines lupus as a chronic autoimmune disease in which the immune system, for unknown reasons, becomes hyperactive and attacks normal tissue.

It affects nine times more women than men, about 1.5 million Americans total. Symptoms can come and go in episodes known as “flares,” and vary according to the type of lupus and the individual. People having it can experience a fever over 100 degrees, hair loss, sensitivity to the sun, skin rashes, arthritis, fatigue, anemia or chest pain. Though having no known cause or cure, lupus can be managed.

Christine Miserandino of Lindhurst, New York, was diagnosed at 14. “At first, local doctors didn't know what was wrong,” she said in a telephone interview. “They said I had fibromyalgia, then arthritis, then rheumatic fever. Then we went to Mayo Clinic in Minnesota. Once knowing we were fighting lupus, we could make a plan.”

Later, she attended Hofstra University and worked in a company marketing department dealing with event management and conferences. Three years into that position she experienced a flare and lost all her hair from drug side effects. Now age 28, Miserandino isn't able to work at all due to almost constant pain, including swelling around her heart and lungs that hampers breathing.

About six weeks ago, she experienced another flare. “I was admitted to the hospital after passing out,” she said. “For the first time ever, the lupus seems to have affected my neurological system. My brain and feet are working, but when I tell my feet to walk they don't move well. Now I am using a walker. The feeling is starting to come back, though.”

Her previous flare was three years ago, and had different symptoms.

“Amazingly, some people think I'm making it all up,” she said of her lupus. “People say I don't look sick, but I'm never not in pain. It isn't easy to deal with because people either don't believe me, think I'm lazy, or they can't understand what they can't see.”

Because “hidden” disabilities are so often misunderstood, she started a website for doubters, www.butyoudontlooksick.com.

Advising people with the disease, she said, “You can live a normal life, but you need to adapt and make choices. Be sure to get as much information as possible from reliable sources. The hardest thing is not knowing where to get information.”

For more, see www.lupus.org or danieljvance.com. (This column made possible by a grant from Blue Valley Sod, www.bluevalleysod.com)