Susan didn’t want anyone to know she had systemic lupus erythematosus. She wasn’t sure how her coworkers would react, knowing she had an “autoimmune disease,” even though it’s not infectious like HIV. She couldn’t bare the thought of the pity-looks people would give her, knowing that her body’s defense system was killing itself. Susan was diagnosed with systemic lupus in 1990. Back then, she felt like she had the flu for three weeks every three months. Later, she learned this was called a “flare up.” In 2000, her central nervous system and brain were overwhelmed with all-encompassing, chronic pain. She was cold, she couldn’t sleep, she couldn’t breathe and she was hurting. For lupus patients, life can be managed, yet one’s health must be constantly monitored to prevent serious complications.

So, you ask, what are the symptoms and signs of systemic lupus? In 5-10% of the patients with systemic lupus erythematosus, they develop red, bordered, non-itchy skin rashes on the face and scalp. This form of lupus is called “discoid lupus” and while painless, can cause permanent hair loss and scarring. Half the patients with systemic lupus have a red “butterfly rash” across the bridge of their nose and experience extreme sensitivity to sunlight. Most patients experience arthritis in their hands, wrists and feet.

More serious inflammation of organs occurs in the brain, liver, and kidneys. White blood cells and blood clotting factors also can be decreased in SLE, thereby increasing the risk of infection and bleeding. Inflamed muscles, blood vessels, lungs, kidneys and other body parts can cause internal injuries resulting in chest pain, fluid retention, high blood pressure, kidney failure, loss of appetite, seizures, comas, personality changes, fatigue, fever, numbness, hair loss and Raynaud’s phenomenon (lack of blood supply and pain in the fingers and toes). The symptoms vary, depending on which part of the body is affected and the severity of the condition, of course.

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