Bringing Lupus Center Stage

In late 2013, actress and singer Selena Gomez canceled portions of a concert tour for health reasons. Fans were anxious and took to social media to voice their concerns. Eventually, they had answers. Gomez has lupus. The entertainer went public, shining a spotlight on the little-known autoimmune disease. Then, in 2016, she was forced to cancel part of a second tour due to lupus-related complications.

Other A-list performers, including Nick Cannon and Toni Braxton, live with lupus, but Gomez has probably received the most attention for the condition, in part because of the tour cancelations, but also because of our celebrity-obsessed culture’s fascination with her every move.

For many young people living with lupus, 24-year-old Gomez is the face of the disease, a celebrity they can relate to and someone facing the same uncertainties.

Kiana Johnson, Ph.D., president of the Childhood-Onset Lupus Education and Research Foundation (CLEAR), speaks highly of Gomez and her efforts. “Many of the girls I mentor have spoken about and relate to Selena Gomez,” says Johnson. But she doesn’t think finding an ally should end there and recommends young people with the disease seek peers in the community.

“Meet other young people or young adults with childhood-onset lupus,” Johnson advises. “It’s an encouragement to know others who have gone through similar experiences.” Many online chat rooms and support groups are aimed at young adults, which makes sense for the demographic; young millennials don’t remember a time when the world wasn’t linked via the Internet, and they are often more comfortable connecting virtually than baby boomers or people in generation X.

Florida resident Christine Nolan, 42, who also lives with lupus, says celebrities bringing awareness to the disease can help others. She feels a connection to Cannon, who updated fans from his hospital bed in late 2016. “He’s brutally honest about it and how hard it is to function,” says Nolan. “I hate that he’s sick but am thankful he shares his struggles with people.”

But awareness via celebrity is about more than relatability. After Gomez went public, health-care providers noted a marked increase in young people wanting to be screened for the disease.

“Since Selena Gomez came out with her diagnosis,” says Shikha Jain, M.D., hematologist and oncologist at Chicago’s Northwestern Memorial Hospital, “I have had more patients, especially young women, ask me about the disease, risk factors, and clinical symptoms to be aware of.

“The caveat to this is that these types of disclosures and public journeys through a diagnosis can also lead to patients requesting testing that may be unnecessary,” Jain continues. “It is important to remember that these celebrities are not medical professionals.”

Despite this reservation, bringing lupus into the mainstream discussion benefits patients; the positive outweighs the negative. And the possibility of funding for research that might follow a celebrity disclosure about lupus is something foundations and researchers look forward to.

Right now, however, it’s too soon to tell if celebrity involvement will lead to an increase in donations. But according to the Lupus Research Alliance, “Awareness is helpful across the board. It helps in improving earlier diagnosis of lupus and in increasing public understanding of the disease’s challenges.”

Lupus and its Treatments

The most common type of lupus is systemic lupus erythematosus (SLE). It is an autoimmune disease, meaning it causes the body to attack its own tissues and organs. Flare-ups, when the disease is more active, can be life-threatening. Some patients, however, experience reprieves and have inactive periods between symptoms.

But sufferers like Nolan are rarely at rest. “I’m always in some level of flare,” she says. “A good day for me feels like a flu day to a healthy person.” In other words, at her best, she feels achy and weak.

“Lupus can target almost any organ, including the skin, the joints, heart, lungs, and kidneys, and it affects each patient differently,” says Alyce Marie Oliver, M.D., rheumatologist and director of the multidisciplinary lupus clinic at Augusta University. “This is what makes it hard to treat, too, because there is no simple solution for any one patient. One patient may have chronic pain, whereas another may have frequent rashes and itching. The symptoms can also come and go, so it’s difficult for a patient to fight because the battle is so unpredictable.”

Women are also more likely than men to develop lupus, usually during childbearing years.

Because symptoms vary widely, doctors use a host of different medications and treatments, including Tylenol and nonsteroidal anti-inflammatory drugs for pain, corticosteroids to help streamline the body’s immune system and blood pressure, antimalarials for skin rashes and joint pain, immunosuppressants to weaken the overactive immune system, drugs to help block lupus pathways, and anticoagulants.

Gomez took chemotherapy drugs to fight her disease and help bring her overactive immune system in line. Sharing her diagnosis gave a face to the disease for young people, but sharing her treatment went a step further.

“Young people often look up to celebrities,” says Oliver, “so having a notable voice out there for lupus and sharing her personal struggles and triumphs can also be quite inspiring for patients in similar situations. That’s also a plus because having a positive attitude tends to improve a patient’s outcome.”

The disease varies from patient to patient, so experiences with it run the gamut. Because fewer men develop lupus than women, Louis Obadal’s flare-ups went undiagnosed for years. His wife Heather runs the Facebook page “Men Have Lupus” and is her husband’s full-time caregiver.

The disease is not known to run prevalently in families, but having a family member with lupus puts other members at a slightly higher risk of developing the illness.

Deni Smith, who was 23 years old when she was diagnosed, lost an aunt to complications associated with lupus. “It attacked her joints and lungs,” says Smith. “She fought hard and now she has her butterfly wings.”

An estimated 300,000 children and adolescents live with childhood-onset lupus in the United States, accounting for more than one-fifth of all lupus cases nationally. Pediatric patients with lupus are two to three times more likely than adults to develop kidney disease, neurological complications, and blood diseases, according to the organization CLEAR.

Those who are diagnosed young can usually expect a more severe array of symptoms, including a higher risk for acquiring other autoimmune diseases. Onset of autoimmune hemolytic anemia, according to Jain, is yet another possibility.

Because the course of the disease is so unpredictable, it makes sense that this age group would look to the youthful Gomez for encouragement.

Selena’s Impact

Gomez not only shared her diagnosis and treatment with the world, but she also described the emotional aspects of living with the chronic disease. She talked openly about the depression and anxiety that stem from lupus, two characteristics of the illness that are rarely mentioned.

Smith, who has lived with the disease for almost eight years, says, “I’ve lost everything to this horrible illness. It’s taken my life away piece by piece. I’m no longer that girl who was very active and happy.”

But Smith believes wholeheartedly that Gomez going public has helped those struggling with the condition, and she has friends in the lupus community, too, who can relate to the emotional aspects of living with the illness. “They understand what I’m going through,” says Smith, “because they’re going through it, too.”

Nolan, like Smith, finds comfort in others — notably her family. “I’m lucky. They never complain and never make me feel less, even if I cancel a special day at the last minute because I’m too sick to go. Not everyone is that lucky.”

Depression associated with lupus can arise from many circumstances — not feeling healthy and up to task, mourning one’s former dynamic self, inability or reduced ability to work, and fear of the unknown.

For the lupus sufferer, anxiety is similar in presentation — the possibility of losing a job, inability to chart a particular life course because the disease is so unpredictable, fear of organ failure and even death, and altered life goals and family expectations.

Charitable Effect

By 2016, Gomez felt well enough to perform again and decided to donate a portion of her tour’s proceeds to the Lupus Research Alliance (LRA). It’s a unique charity because all donations support lupus research programs. The organization is able to do this because the board of directors funds all administrative and fund-raising costs.

Johnson’s organization, CLEAR, also emphasizes research and uses a portion of donations to fund programs and activities geared toward young people and adolescents with lupus.

“With donations from last year’s fund­raiser, we created care packages for pediatric lupus patients,” says Johnson. “Included in the care package were a medicine organizer, water bottle, portable cell phone charger, first-aid kit, a book on lupus, a journal, and hand sanitizer. So far, we have distributed over 230 of these care packages and hope to continue distributing to pediatric rheumatology clinics nationwide.”

Johnson also hosts virtual youth groups once a month. A young person chooses a topic to discuss online. Experts are often on hand during the sessions to give presentations and answer questions.

Another CLEAR initiative is the UnLeashed Transition Preparation Program. “With the assistance of our youth advisory committee, adolescent health experts, and pediatric and adult rheumatologists, we have developed a workshop that teaches youth about health-care transitions while living with lupus,” Johnson says.

While it’s too soon to say how much of a financial impact Gomez and other celebrities will have on lupus-related charities and their worthwhile programs, Johnson expects donations to rise over time due to the added attention.

Valuing Family

It’s fair to point out that although most lupus patients recognize the value in increased awareness, they don’t always relate to a famous person’s experience with the disease. The average person trying to finance a life riddled with health issues is not well known, much less in a position to cancel a concert tour.

Nolan notes that a family’s role in caring for people with lupus is sometimes missing from the discussion. When a lupus sufferer is particularly ill, he or she relies on children, parents, spouses, and others. “My son is trying to raise money to get me a scooter or power chair,” she says. “He even offered to sell his Xbox and all his toys to get it for me.”

Obadal, who cares for her husband, left her job to provide round-the-clock nursing for him. Among her many tasks, she gives him medications and quizzes him on animal names to help with memory loss as the disease continues to attack his central nervous system.

Celebrities who have lupus also understand why strong family connections are important. Gomez often mentions her family in interviews and counts them as a support system.

And Lady Gaga considers her late aunt, Joanne Stefani Germanotta, a major influence on her career. Germanotta died of complications related to lupus at age 19, about 12 years before Gaga was born. The title track of her new album Joanne is a bittersweet tribute to her aunt.

As Gaga has said, “The experiences of our family and our challenges make us who we are.”

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Selena Gomez Donates to Lupus Research

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Bobbie Metevier is a full-time freelance writer and editor. 

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