The Lupus Foundation of America has counted about 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 very unpredictable.
As she explains, lupus can affect anyone; she doesn’t know race, age or ethnic preference. Patients experience symptoms of varying degrees of severity, and more often than not, they cannot explain them.
Mallory’s first diagnosis was rheumatoid arthritis. After six years, however, she began experiencing many additional symptoms, so she was diagnosed with lupus. After two years, Mallory was in a terrible condition and couldn’t even breathe, so she had to seek proper medical care.
Mallory explains that the night before she went to the hospital, she thought she was dying and was even afraid to go to bed.
Indeed, when she arrived at the hospital, she did die, but the doctors brought her back to life. During the 86 days she was bedridden, she went into a coma, was hooked up to a ventilator, received chemotherapy and underwent dialysis. Only later did doctors discover that the cause of these symptoms was lupus, which had spread to her kidneys.
Her goal is to educate women about the symptoms of lupus because early detection of lupus can prevent it from spreading to the kidneys, brain, heart and other organs.
Warning signs of lupus and its impact on life
The National Health Educator from the Lupus Foundation of America explains that the first symptom of lupus is debilitating fatigue. Here are the other symptoms of lupus, she says:
Ulcers in the mouth or nose
Abnormal blood clotting.
Turning blue in the fingers or turning blue 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 on deep breaths
Swelling of the arms, legs, feet, and/or around the eyes
Loss of hair
Sensitivity to light or sunlight
Stothers adds that while some people may 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 disorders 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 the autoimmune disease psoriasis. And that’s a big deal. Since 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. That way you can prevent 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, especially estrogen, and the environment also play an important role.
According to Stothers, lupus is usually diagnosed in women at the most fertile age, between 15 and 44. She adds that hormones are in constant flux during pregnancy and after childbirth, so many women are diagnosed during these periods of life. However, she has had patients with lupus between the ages of 70 and 80.
Although most people with lupus can lead happy and 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 some lifestyle changes. One example is Mallory, who left her career to work for the Lupus Foundation.
She explains that each lupus patient has to identify their own triggers for flare-ups, which can be mild, moderate or severe. Although health care providers like Stothers provide emotional support to their patients, support from their loved ones does not