The Grapevine

What Is Lupus? The Autoimmune Disease Is Not 'Catchy,' Despite What 1 In 3 People Say

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May 10 is World Lupus Day, a time to raise awareness of an autoimmune disease that affects mostly women. Andrewydk, public domain

Lupus affects about 1.5 million Americans and a total of 5 million people worldwide, according to recent estimates. Since 2004, organizations around the globe have observed May 10 as World Lupus Day to raise awareness about the health effects of the incurable disease. This year, nearly 17,000 adults from 16 nations across Europe, Asia, and the Americas answered six simple survey questions intended to discover exactly what people do and don’t know about lupus.

The results may surprise you. Roughly one in three people said they did not know lupus is a disease while a similar number of people said they felt uncomfortable sharing food with someone who has lupus, suggesting they mistakenly believe they might “catch” lupus. The survey also revealed that just over half the respondents were not aware that the disease can lead to serious health complications, including kidney failure and heart attack.

Lack of knowledge combined with social stigma suggests a long march to raise awareness of this disease, which commonly affects women more than men, and blacks, Hispanics, and Asians more than whites. Though it cannot be cured, lupus is not infectious and it can be managed. Many patients live long, productive, and relatively normal lives.

 

Systemic Lupus Erythematosus Prevalence in the United States | HealthGrove

 

Autoimmune

The symptoms of lupus often mimic those of other diseases, including diabetes, thyroid conditions, blood disorders, Lyme disease, fibromyalgia, and rheumatoid arthritis. Symptoms vary from patient to patient, while the health effects range from a rash to a heart attack. For these reasons, the disease is extremely difficult to diagnose.

Lupus is a chronic autoimmune disease. Normally, the body’s immune system produces antibodies to attack foreign invaders, such as germs, viruses, and bacteria. An autoimmune disease, however, means the immune system sees the body’s own cells as invaders and mistakenly attacks healthy tissue, causing inflammation, pain, and damage to various parts of the body.

Some doctors advise anyone diagnosed with any autoimmune disorder to be on the lookout for lupus, since lupus patients are frequently diagnosed with a second or even third disorder. 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.

Along with knowing lupus is an autoimmune disorder and related to other such disorders, scientists also understand some of the underlying genetics of the disease. It runs in families, though not all patients have a family member with lupus. Simply carrying the gene does not mean a person will develop lupus. The environment and hormones also play their roles. Specifically, scientists believe estrogen is involved, due to its much higher incidence among women (90 percent of all cases) and the average age range for diagnosis which is between 15 and 44 — a woman’s fertility years.

Lupus gets its name from one of its most common symptoms. Today we see the characteristic rash across the cheeks and nose as butterfly-shaped but in earlier times, doctors thought it looked like a wolf’s bite— hence “lupus,” which is Latin for “wolf.”

Other common symptoms include:

  • Extreme tiredness
  • Headaches
  • Painful or swollen joints
  • Fever
  • Anemia
  • Swelling in the feet, legs, hands, or around the 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

Even though most lupus patients are female adults, men, older people, and children may also develop lupus. No one test can diagnose the disease, so doctors commonly look at a variety of signs, symptoms, and test results to determine whether a patient has the disease. 

No Stigma, No Shame

Once diagnosed, a patient may or may not take medications, some which specifically treat lupus, to help manage their symptoms. Generally, patients are encouraged to avoid alcohol, maintain a healthy diet, get plenty of rest, and avoid stress. They are taught to be self-aware and watch for weakness. By catching symptoms early and consulting a doctor, patients can avoid dramatic and potentially life-threatening flare-ups.

Triggers are individual to each patient yet some are very common. Ultraviolet rays from the sun and even fluorescent light bulbs activate inflammatory cells in the skin and sometimes cause flares. Infections and stress also tend to incite lupus. And some patients have reported injuries, pregnancies, and medicines also kicked off episodes. While many patients look completely normal and healthy, they may feel awful at times and find the smallest task impossible to complete. Because of the disparity between looks and feelings, some patients find the disease to be isolating at times.

All told, lupus is an unpredictable, though manageable, disease that is neither “catching” nor common. There’s no need for shame or stigma, and many patients successfully control its symptoms while scientists continue to search for more effective treatments and a cure.

Most recently, researchers discovered a natural mechanism related to the X chromosome, which may shed light on autoimmune diseases in general and lupus in particular. The finding is based on the fact that women are at increased risk for autoimmune disorders because the X chromosome carries more immunity-related genes than the Y chromosome. (As you may remember, women carry two X chromosomes, while men carry one X and one Y chromosome.)

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