The Lupus Foundation of America has identified approximately 1.5 million Americans with lupus, and statistically, nine out of ten are women. This autoimmune disease is considered highly unpredictable by experts and patients alike.
Mallory Dixon is a young and determined lupus patient (age 29). She also agrees that this disease cannot be described because it is so unpredictable.
As she explains, lupus can affect anyone; she does not know race, age or ethnic preference. Patients experience symptoms of varying severity, and more often than not, they can’t explain them.
Mallory’s first diagnosis was rheumatoid arthritis. After six years, however, she began to experience many other symptoms and was diagnosed with lupus. After two years, Mallory was in terrible shape and couldn’t even breathe, so she had to seek treatment.
Mallory explains that the night before she arrived at the hospital, she thought she was going to die and was even afraid to go to bed.
Indeed, when she arrived at the hospital, she died, but the doctors brought her back to life. During the 86 days she was bedridden, she went into a coma, was put on a ventilator, received chemotherapy and underwent dialysis. Only later did doctors discover that the cause of her symptoms was lupus, which had spread to her kidneys.
Her goal is to educate women about the symptoms of lupus, as early detection of this disease can prevent its spread to the kidneys, brain, heart and other organs.
Warning signs of lupus and its impact on life
The Lupus Foundation of America’s National Health Educator explains that the first symptom of lupus is debilitating fatigue. Other symptoms of lupus, she says, include:
Sores in the mouth or nose
Abnormal blood clotting.
Lividity in the fingers or blueness from the cold.
A butterfly-shaped rash on the nose and cheeks (in the past, this rash reminded doctors of a wolf bite, so they gave it the name “lupus,” which means “wolf” in Latin)
painful or swollen joints
Chest pain when breathing deeply
Swelling of the arms, legs, feet and/or around the eyes
Sensitivity to light or sunlight
Stothers adds that while some people look normal, they may have tremendous difficulty performing even the most minor tasks. These people may feel terrible, while others may say they look perfectly normal. This is why lupus is often an isolating disease.
Lupus is often confused with autoimmune and hormonal diseases because its symptoms mimic heart, bone, muscle or lung disease, as well as Lyme disease, rheumatoid arthritis, fibromyalgia, diabetes and blood disorders.
Mallory says the only disease that runs in her family is psoriasis, an autoimmune disease. And that’s very important. Because many lupus patients are misdiagnosed with another autoimmune disease, if you have a family history or have been diagnosed with the disease, you should be careful. This will help you avoid a sudden exacerbation of the disease.
The most common autoimmune diseases are inflammatory bowel disease, type 1 diabetes, Addison’s disease, rheumatoid arthritis, reactive arthritis, Hashimoto’s disease, vitiligo, Graves’ disease, celiac disease, scleroderma and Sjogren’s syndrome.
Stothers explains that although lupus has a genetic component, this does not mean that a person will necessarily develop the disease. Hormones, particularly estrogen, and the environment also play an important role.
Stothers says lupus is usually diagnosed in women at their most fertile age, between 15 and 44. She adds that hormones are constantly changing during pregnancy and after childbirth, so many women are diagnosed during these times of life. However, she has had lupus patients in their 70s and 80s.
Although most people with lupus can lead happy, productive lives, they must monitor their symptoms very closely to stay healthy. We live in a busy world, so it can be quite difficult to maintain self-awareness as these people have to make lifestyle changes. That’s the case for Mallory, who left her career to work for the Lupus Foundation.
She explains that each lupus patient needs to identify their own triggers for flare-ups, which can be mild, moderate or severe. While health care providers like Stothers provide emotional support to their patients, support from their loved ones is not enough.