Lupus is a sneaky disease. That’s why it’s often referred to as “The Great Imitator.” An autoimmune disorder, it can mimic many other conditions and can affect any system or organ in the body. That makes it both difficult to diagnose and challenging to treat. Kids with lupus may be shuttled from one specialist to another, waiting weeks or even months between appointments, hoping for a definitive diagnosis.
But now, Connecticut Children’s is addressing this situation with its new Lupus Clinic, which brings multiple specialties together to provide a comprehensive approach to diagnosis and treatment options. And that’s good news for patients like Christian Peoples.
A Trip to Remember
It was supposed to be a trip to remember—and it turned out to be a trip the 20-year-old Manchester resident will never forget. Christian and his sister were in Hawaii in June 2019 visiting an old family friend, who is a retired Navy Seal. “It’s always been my dream to go diving with him,” Christian said, “so we did. And I guess the sun and salt water must have gotten to me. I had been experiencing minor swelling and pain in my fingers and ankles on and off for a while, but when we came up to the surface, my ankles were severely swollen and extremely painful, and by the time we were ready to leave, I couldn’t even feel or move my middle fingers.”
The emergency department in Hawaii couldn’t figure out what was wrong, so they sent him home to Connecticut. His family doctor wasn’t sure either, but suggested important labs. “I had to get so many blood tests done,” he recalled. Finally, low kidney function brought him to Connecticut Children’s.
Caring for Christian
When he met with Barbara Edelheit, MD, Division Head of Rheumatology, he told her about the pain in his fingers and his diminished appetite. “I lost about 10 pounds,” he said, “and that was one of the signs.” Dr. Edelheit was concerned that Christian was developing lupus due to the constellation of abnormal labs, arthritis, weight loss and his poor kidney function. She spoke with the team in the Division of Nephrology, where nephrologist Sherene Mason, MD, arranged for a kidney biopsy to provide critical information as to the type of kidney involvement.
Christian’s story is unusual only because he’s male. Ninety percent of patients with lupus are female, and the disease is most prevalent in those of African or Latin-American descent, or in patients who are Asian or Native American. And, as with Christian, the most common symptoms are arthritis and kidney disorders. Then there is the distinctive facial rash that gives the disease its name: “Lupus” is Latin for “wolf,” and to the 13th-Century physician who first identified the disease, the rash—which typically stretches across the bridge of the nose and both cheeks—looked like a wolf bite.
But lupus can affect any organ or system in the body. “Kids with lupus vary a lot in how they present,” Dr. Edelheit said. “It can cause cognitive and neurologic problems; it can present as a cardiology issue. We had a young male with a lot of hair loss, fever and arthritis but no kidney involvement. It’s remarkable to think of all the varied combinations there can be. Kids come in with seizures, bleeding in their lungs, disorientation. Most people don’t think of strokes in a young person, but that can be their first presentation of lupus.”
The Need for a New Clinic
That is why the concept of the Lupus Clinic is so important. Because lupus can affect so many body systems, treatment has to be coordinated between different specialists. And coordination is not always easy. If a private practice pediatrician suspects lupus, he or she will likely put in a request for consult from a single specialist, and it might be months before a biopsy is taken. By combining several specialties in the new Lupus Clinic, that biopsy can happen within a day. And that makes it more likely that the disease can be treated before it does significant organ damage.
The team at the Lupus Clinic includes a range of specialists. Here they are on opening day, January 10, 2020.
Coordination also means treatment can be more effective. “To determine the ideal immunosuppressive therapy, it is critical to know the specific type of kidney involvement,” Dr. Edelheit said. “Dr. Mason and I choose the medication together, we taper the steroid medication together; it’s a collaborative process.”
That collaborative approach applies in other ways in the Lupus Clinic. The staff includes a full-time psychologist, because there are a range of psychological and social issues that come with a child having a chronic disease like lupus. The team also includes a social worker to help children and their families find outside resources that can provide a range of support services. A nurse provides education on medications that the patients have to take. And, of course, there are other Divisions at Connecticut Children’s that both refer patients to the Lupus Clinic and provide specialized care for them.
Back in the Game
For Christian, treatment was intensive. “I was in there every day for two weeks,” he said. It included eight-hour infusions of powerful drugs that left him feeling awful. But it got him back on his feet and back in the game at Western New England University, where he is a sophomore and a member of the soccer team. His treatments were so effective that he was playing soccer again by October 2019.
Today, Christian takes several pills daily and avoids getting too much sun, salt and stress, but with those few considerations, he is back to living his normal life. And those are the kind of results that all kids with lupus want.
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