About 1.5 million Americans have lupus and nine out of every 10 are women, according to the Lupus Foundation of America. Surprisingly, in two separate conversations about this autoimmune disease — one with a patient, the other with a specialist nurse — the word most frequently spoken was “unpredictable.”

“It’s a disability that you cannot describe because the whole thing about lupus is it’s so unpredictable,” Mallory Dixon, 29, told Medical Daily.

Describing her personal experience, she speaks with the lightest Southern lilt and sounds both young and purposeful at once. In the photograph attached to her email, an attractive, petite brunette with a taste for stylish clothes smiles broadly.

Among the ways lupus cannot be predicted is it strikes at any age, with little racial or ethnic preference, Dixon explains. Worst of all, symptom severity not only varies from patient to patient but also over a person’s lifespan, something she experienced first-hand. Though her doctors identified rheumatoid arthritis when she was 17 years old, Dixon continued to experience symptoms that could not be explained for years.

“One of my doctors told my parent I might need to see a therapist,” she said.

Eventually — six years after her original arthritis diagnosis — a doctor added up her many symptoms, her medical history, and diagnosed lupus. Still, two years later, feeling miserable and finding it difficult to breathe, she knew something had gone terribly wrong. She picked herself up and went to the hospital.

"The night before, I was afraid to go to sleep," Dixon said. "I tried to downplay the pain, but I had the feeling I was dying."

Tragically, she was. Arriving at the hospital, she "technically" died, was brought back to life, and then didn’t walk outside again for 86 days. During this most painful period of her life, she fell into a coma, spent time on a ventilator, received chemotherapy, and was treated with dialysis. Later, she learned her pain and symptoms stemmed from the fact that the lupus had moved into her kidneys and they were "shutting down."

"They do think with early prevention we can keep lupus from spreading to organs like the kidneys or in some cases, a patient’s heart or brain," Dixon said. This is why she believes her most important mission is to "educate young women about what to look for."

What are the signs?

"Debilitating fatigue" is the very first symptom Sarah Stothers, RN, names. Talking with Medical Daily from the Lupus Foundation of America where she works as a national nurse health educator, she lists the most common symptoms (for both females and males):

  • Extreme tiredness
  • Headaches
  • Painful or swollen joints
  • Fever
  • Anemia
  • Swelling in the feet, legs, hands, and/or around eyes
  • Pain in chest when breathing deeply
  • Sun- or light-sensitivity
  • Hair loss
  • Abnormal blood clotting
  • Fingers turning white and/or blue when cold
  • Mouth or nose ulcers
  • A butterfly-shaped rash across the cheeks and nose (in earlier times this common rash reminded physicians of a wolf's bite hence the name "lupus," Latin for "wolf")

"Some people look completely normal yet they feel awful," said Stothers, who added "doing the smallest task is impossible." The disease is often isolating, she explains, "because you look so normal on the outside, and that’s probably the biggest thing: 'But you look completely fine!'"

Called "the great imitator," lupus' symptoms often mimic those of some heart, lung, muscle, and bone diseases as well as blood disorders, diabetes, thyroid problems, Lyme disease, fibromyalgia, and rheumatoid arthritis. This sharing of symptoms suggests to some scientists lupus is connected to autoimmune and hormonal disorders.

"Lupus does not run in my family," Dixon said. "The only thing that does run in my family is psoriasis, which is another autoimmune disorder."

And this is key: Because many lupus patients are diagnosed with "a second or third autoimmune disorder" at some point in their lives, anyone who is diagnosed with one of these diseases (or whose family history contains one) should be on the lookout for lupus symptoms. By catching lupus early, Dixon said, you may be able to avoid a dramatic flare-up like the one that nearly killed her.

(The most common autoimmune diseases are rheumatoid arthritis, reactive arthritis, celiac disease, pernicious anemia, vitiligo, scleroderma, psoriasis, inflammatory bowel diseases, Hashimoto’s disease, Addison’s disease, Graves’ disease, Sjögren’s syndrome, and type 1 diabetes. In each of these disorders, the immune system mistakenly attacks bodily tissues as if they were germs, viruses, or other foreign invaders.)

Cause and Treatment

“We know there’s a genetic component to lupus,” said Stothers, whose voice radiates intelligence and compassion. She explains how simply carrying the gene does not mean you will develop lupus, environment and hormones also play a role. Specifically, scientists believe estrogen is involved, due to the higher incidence among women and the average age range for diagnosis.

“It is predominately diagnosed between the ages of 15 and 44,” said Stothers, who added “and that’s the time when women are most fertile.” In fact, many women are first diagnosed while pregnant or after giving birth, when their hormones are in flux, she says. Still, Stothers has seen patients diagnosed in their 70s and 80s (and here she uses the word “unpredictable”), so even this is not entirely definite.

Once diagnosed, a patient can take medication to help manage their symptoms, and, according to Stothers, there’s a complete arsenal of appropriate and effective drugs.

“We do have immuno-suppressants that are used as chemotherapy along with an antimalarial drug,” Stothers said. “Steroids are a good quick fix when someone’s in a flare-up,” she added, though here the drawbacks include long-term effects, such as weight gain and mood changes. In 2011, the Food and Drug Administration approved the prescription drug Benlysta, the first drug developed specially for the treatment of systemic lupus erythematosus (SLE lupus, the most common type).

“There are a lot of drugs in the pipeline and they are doing research,” Stothers said. “I encourage people to sign up for clinical trials.”

Though many people are afraid of experimental drugs, Stothers explains new treatments, by the time they reach the stage of human research, have already undergone testing. Plus, she says, a patient can ask questions at any point or even drop out of the clinical trial if necessary. Treatment matters, yet support is crucial.

Support

Lupus patients often live long, productive, and happy lives, says Stothers, but to stay healthy, they must monitor their own symptoms as does Dixon. Though she gave up her dream of a high-powered fashion career in New York City, she continues to work from home while advocating for the Lupus Foundation. Naturally, though, self-awareness can be challenging in a busy world, a busy life.

“That’s the hard thing with lupus, the unknown of when you’re going to have a really bad flare-up,” said Dixon, who explained that patients have mild, moderate, or severe flare-ups at any time. “Everyone has to figure out her own triggers,” she said, explaining how stress, the common cold, and working too hard are hers.

Generally, Stothers finds lupus patients to be "very type A people" who may need some help, but "somehow they make it work. People with lupus are probably the most courageous people I’ve ever met and the most in tune with their bodies," she said. "I am very much privileged to know them."

While Stothers and health care professionals like her offer compassion and lend emotional support, Dixon who is grateful for the support she receives from family, friends, and the Lupus Foundation, tells patients they must become their own "biggest cheerleader."

"At the end of the day, you’re going to be the one to get yourself out of bed," Dixon said.