‘Sharon’ is from Spring Hill, Florida, reads this column in the daily Hernando Today, and prefers not using her real name. Not long ago, a medical doctor diagnosed her with lupus.
The Lupus Foundation of America website defines lupus as a chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood, kidneys, and brain. Persons affected can experience a fever over 100 degrees, hair loss, sensitivity to the sun, skin rashes, arthritis, fatigue, anemia or chest pain. Though no cause or cure exists, lupus usually can be effectively managed. It affects about 1.5 million Americans, mostly women. Lupus symptoms come and go in episodes known as ‘flares,’ which vary according to the type of lupus and the individual.
‘I’d gone to my arthritis doctor because my hands hurt so much, and I had so many aches and pains,’ said 75-year-old Sharon in an email interview. ‘I’d never heard of the disease until I was told the rash across my cheeks and nose was lupus. I’d never heard of it before, and neither had any of my family or friends.’
The doctor didn’t offer her any information or a brochure. At the time, she was too stunned to ask for any. At home later, she did go searching herself for lupus information on the Internet and what she learned surprised her.
‘I turned up enough articles to read that gave me so much information,’ she said. ‘I didn’t realize at first how scary (the disease) can be. Now I look for any and all articles. It was surprising to learn that the federal government spends $89 million a year on the study of lupus, yet no one I know knew anything about it.’
As a precaution, due to sensitivity to the sun, she does wear a protective hat when out hanging laundry to dry. Besides having lupus, she was diagnosed many years ago with Crohn’s disease, an inflammatory bowel disease.
For people recently diagnosed with lupus, she said, ‘Seek out any articles, go to the library, talk to people, and who knows, you may get some important information out of it. Don’t be afraid to talk about it.’
Sharon doesn’t know of any lupus support groups in her immediate area, but when getting a little depressed about having pain, she does have a friend who will listen and ‘boost’ her up.