Fifteen-year-old Emily had been feeling out of sorts. She was experiencing extreme fatigue and headaches. Then she developed a rash. Her mother made an appointment with Emily’s pediatrician, who listened carefully to her symptoms and ran some blood tests.
Emily’s doctor referred her to a rheumatologist, who diagnosed her with lupus. At first, it was scary, as she and her mother had never heard of it. Still, they were relieved to know what was wrong so the teenager could start treatment and receive the information and support services she needed.
“It’s not uncommon for the first signs of lupus to develop in adolescence, particularly in girls after puberty,” explains Dr. Nancy Pan, a pediatric rheumatologist at Hospital for Special Surgery. “Although less common, it can also occur in younger children. It’s an autoimmune disease, and nobody knows exactly what causes it.”
When someone has an autoimmune disease, the body’s immune system, which is supposed to protect you from illness and infection, attacks healthy cells and organs by mistake. Lupus can affect many parts of the body and is often unpredictable.
“The immune system is complicated and mysterious, and lupus affects people differently,” says Dr. Pan. “For some, symptoms develop quickly and it is easier to diagnose. For other patients, symptoms develop slowly and mimic those of other diseases. In these cases, it can take longer to get a firm diagnosis. “
Some of the hallmark symptoms include fatigue, headaches, joint pain or swelling, a “butterfly” rash on the face that spreads over the cheeks and the bridge of the nose, a rash elsewhere on the body and muscle aches.
Lupus affects some patients more harshly than others. As time goes on, severe cases of lupus can damage the kidneys, heart, lungs, brain and blood vessels. However, there are different forms of lupus, and not everyone will experience severe symptoms or damage to their organs.
“The symptoms of lupus tend to wax and wane. Patients often have good days and bad days,” Dr. Pan explains. “On bad days, they often complain of fatigue and malaise. They find it difficult to think clearly, focus or concentrate. They also feel achy, and it can be hard for their loved ones to understand that they‘re in pain because they look okay on the outside.”
Pediatric rheumatologists are skilled in providing specialized care to help patients live their lives to the fullest. A number of medications are used to treat lupus or problems caused by the disease.
For their overall health, it’s also important for patients to stick to a healthy, balanced diet and make sure they’re getting enough calcium and vitamin D, according to Dr. Pan. Exercise and stress management can also help maintain patients’ general health. Sun avoidance is critical for people with lupus, as ultraviolet rays can cause rashes and flare-ups.
At HSS, a team approach to care aims to address all of a patient’s needs. “Lupus is complicated, and our goal is to treat not just the disease, but the whole person so we can meet all of his or her needs. We get to know our patients very well.” In addition to the rheumatologist, the care team can include an orthopedic surgeon, dermatologist, kidney specialist, nurses and social workers.
A good support system is essential for people with lupus, and the Department of Social Work Services at HSS offers a number of programs to help patients. "Lupus is a chronic illness that not only affects a person medically, but also mentally and emotionally," says Melissa Flores, outcomes manager in the Department of Social Work Programs at Hospital for Special Surgery.
"There are often psychosocial challenges, such as feelings of isolation, adjusting to medications with side effects, and coping with the invisible, unpredictable nature of the illness."
LupusChat® or Charla de Lupus® is a bilingual support group at HSS that addresses the psychological and educational needs of patients with lupus and their families. The free monthly program provides support to teenagers and young adults under age 30, as well as to their loved ones.
Another program known as LANtern®, the Lupus Asian Network, is the only national hospital-based bilingual support and education program dedicated to serving Asian Americans with lupus and their families.
LupusLine® is a free telephone helpline at Hospital for Special Surgery offering peer support and education to people with lupus and their families. The service is also available to the general public with a toll-free phone number (866-812-4494). In addition to the United States, volunteers have counseled callers from Canada, Europe, South America, Jamaica, China and India.
Last year, HSS developed LupusMinder, a mobile app designed to help patients manage their illness. The app enables people to record and track their symptoms; manage their medications; receive reminders for doctor appointments; and write down questions to ask their doctor.
Living with lupus can be confusing and challenging, especially for a young child. That’s why HSS volunteer Judy Campbell wrote the book, “Chita Shares A Secret,” to give children diagnosed with lupus the courage to cope and live with the condition.