Celebrity Patients Bring Lupus into The Headlines, But Much Remains Unknown

This September, actress and singer Selena Gomez announced on Instagram that she underwent a kidney transplant as part of her treatment for lupus, an autoimmune disease in which a body’s immune system begins to attack its own tissues and organs.

Gomez and other celebrities such as Nick Cannon, Toni Braxton and Seal have publicly spoken out about their struggles with lupus, which affects 1.5 million Americans and over five million people worldwide. Despite these high-profile patients, the disease still remains a mystery to much of the general public and the scientific community.

To shed light on symptoms, causes and treatment options for the disease, April Jorge, MD, a research fellow in the rheumatology unit at Massachusetts General Hospital , recently gave a talk on “Understanding the Mystery of Lupus” at Mass General’s Maxwell and Eleanor Blum Patient and Family Learning Center.

What is Lupus and Who Does it Affect?

The immune system typically protects us against infections by forming antibodies that detect and respond to invading pathogens, such as viruses and harmful bacteria. However, Jorge explained that in patients with lupus, the body forms auto-antibodies that target the own body’s cells as if they were intruders.

Lupus is a non-contagious and non-infectious disease that is caused by a combination of environmental and genetic factors. Jorge said that at least 50 different genes contribute to an increased risk of developing the disease.

Lupus is more common in women, and in African Americans and Hispanic populations. Patients are typically diagnosed between the ages of 15 to 45 years.

Symptoms of Lupus

Symptoms of lupus include skin rashes, hair loss, sores in the mouth, foggy thinking, seizures, vision problems, joint pain, liver inflammation, inflammation in the lining of the lungs and heart, blood clots, fatigue, and fever, among others.

“People with lupus also have a higher risk of heart attacks and strokes, and can be at a greater risk of getting osteoporosis and depression,” said Jorge. Lupus can also damage internal organs, especially the kidneys. Up to 50 percent of patients with lupus develop lupus nephritis—an inflammation of the kidneys that can prevent them from functioning properly.

Jorge suggested patients look out for several symptoms that may be warning signs of kidney damage.

“There can be some signs like swelling in the legs or belly,” she said. “Sometimes, it’s picked up by doctors if the patient has high blood pressure.” Other lupus patients may not have any outward symptoms of kidney damage, which makes it important for them to undergo regular screenings.

Diagnosis

Jorge explained that the disease is so complex because signs and symptoms differ from person to person. Many times, symptoms of lupus overlap with those of other disorders. Hence, it takes an average of 6 years to obtain a lupus diagnosis.

Diagnosis is typically made by factoring in combination of symptoms, blood tests and other factors, such as impaired liver or kidney function as a result of inflammation.

Treatment

While there is no cure for lupus, it is possible to treat the symptoms with medications and lifestyle changes.

Pharmaceutical Options

Medications prescribed for treating lupus include Prednisone (a corticosteroid that acts as an immune suppressant), Hydroxychloroquine (a drug originally used to treat malaria) and other immunosuppressant medications.

Currently doctors and scientists are trying to identify new and more effective treatments for lupus with fewer side effects. Jorge is optimistic about new drugs on the horizon that could improve treatment options. She said that biologics (products derived from natural—rather than chemical—sources) target certain parts of the immune system and are some of the most effective medications for lupus.

“Belimumab (manufactured under the brand name Benlysta®), which is given either as an injection or through an IV infusion, is the first drug to be approved for lupus in 50 years,” said Jorge. “But in the next five to 10 years, there will be many more.”

Lifestyle Modifications

Lifestyle changes can also help manage the symptoms of lupus, such as:

  • Exercising regularly
  • Getting enough sleep
  • Eating a healthy diet with fruits, vegetables and lean meats
  • Avoiding excess sun exposure
  • Using sunscreen lotions with at least SPF 50 and wearing protective clothing
  • Avoiding tobacco, as studies have indicated that smoking can make the disease more severe and harder to control

Based on recent research findings, the same strict guidelines may not apply to alcohol consumption. Jorge is currently investigating the impact of alcohol use on risk of heart attacks and death in patients with lupus. The research team has found that patients with lupus who consume light to moderate alcohol intake have lower rates of heart attacks and overall mortality than those who do not consume any alcohol.

To learn more about Lupus, please visit the Lupus Foundation of America’s website.

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