The young woman walked down the dock towards the cruise boat wearing a big, floppy straw hat, a long-skirted, long-sleeved cotton dress that didn’t resemble one worn for religious reasons, cotton gloves and athletic shoes and socks. The weather was in the high 80s and there was little wind to speak of.
We were all watching her, hopefully not staring with our mouths agape, when her mother came by and told us that she suffers from lupus and is sensitive to sunlight. Many in the crowd had no idea what lupus is.
“Lupus is a chronic inflammatory disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems including your joints, skin, kidneys, blood cells, brain, heart and lung,” explains Mayo Clinic.
The Lupus Foundation estimates that 1.5 million Americans and at least five million people worldwide have a form of lupus. Although it mostly strikes women of child-bearing age, it can be developed by men and children as well. It most often begins between the ages of 15 to 44.
“People with lupus can experience significant symptoms, such as pain, extreme fatigue, hair loss, cognitive issues, and physical impairments that affect every facet of their lives,” Lupus Foundation says. “Many suffer from cardiovascular disease, strokes, disfiguring rashes, and painful joints. For others, there may be no visible symptoms.”
African American, Hispanic/Latino, Asian, Native American, Alaska Native, Native Hawaiian and other Pacific Islander women are two to three times more likely to be diagnosed with lupus than Caucasian women.
The biggest challenge is getting an accurate diagnosis. Known as “the great imitator” symptoms mimic many other diseases plus symptoms come and go or change often enough to make diagnosis difficult.
On one forum a person wrote, “I knew something wasn’t quite right by age 26. I had already seen an allergy doctor, two neurologists, ENT and gastro doctor for my bizarre and unrelated symptoms. By 27 I was referred to a shrink and labeled a hypochondriac. At 31 things really hit the fan. The fatigue at this point was so bad that I was taking two 200 mg caffeine pills in order to get out of bed.”
That’s five years without a diagnosis and still her primary care physician thought she was making up her severe symptoms. A year and a half later she was diagnosed with lupus.
“The most common symptoms of lupus (which are the same for men and women) are: extreme fatigue; headaches; painful or swollen joints; fever; anemia; swelling in feet, legs hands, and/or around eyes; pain in chest on deep breathing; butterfly-shaped rash across cheeks and nose; sun or light-sensitivity; hair loss; abnormal blood clotting; fingers turning white and/or blue when cold; mouth or nose ulcers,” states the Lupus Foundation.
The National Institute of Health tells us that the causes of lupus are unknown. Isn’t that typical of all autoimmune diseases? “There is no cure, but in most cases lupus can be managed. Lupus sometimes seems to run in families, which suggests the disease may be hereditary. Having the genes isn’t the whole story, though.
“The environment, sunlight, stress, and certain medicines may trigger symptoms in some people. Other people who have similar genetic backgrounds may not get signs or symptoms of the disease. Researchers are trying to find out why,” NIH says.
The trick for a lupus sufferer is to avoid the triggers that cause a “flare” which is the term used when symptoms are present. Besides the sun, fluorescent light bulbs and drugs that make you more sensitive to light should be avoided. A flare can occur when you have an infection such as a cold or other viral illness. You should try to avoid exhaustion and emotional stress.
On the positive side, women with lupus can and do have healthy babies.
The treatment for lupus most likely will include drugs to reduce symptoms, prevent flares, balance hormones and prevent damage to joints. Your healthcare providers, and there most likely will be several of them, will explain it all to you.
Kathy Hubbard is a member of Bonner General Health Foundation Advisory Council. She can be reached at 264-4029 or firstname.lastname@example.org.