Children with autoimmune diseases rejoice at special summer camp

Doctor’s advice…sleepaway camp? This is what it’s like to be 12 years old diagnosed with lupus He found himself laughing on the high ropes course as his fellow campers hoisted him into the air.

“It’s really fun,” said Dylan Aristi Mota, excited to have the chance to participate in a childhood ritual. The doctors reassured her mother that it would be over soon. This upstate New York camptoo. Dylan was relieved to know that “if something else came up, it would be taken care of sooner rather than having to wait until I got home.”

It may sound surprising, but diseases such as lupus, myositis, and some forms of arthritis can when the immune system attacks the body Rather than protect strike an adult. With the exception of type 1 diabetes, these autoimmune diseases are rare in children, but they do occur.

People often ask, “Can children get arthritis?” lupus? ” Dr. Natalia Vázquez Canizares, a pediatric rheumatologist at Montefiore Children’s Hospital, said she partnered with the Frost Valley YMCA last summer to allow some young people to try traditional sleepaway camp despite strict medication schedules and nervous parents.

“Imagine being an adult. It’s difficult. When you have this disease from a young age, it’s very difficult to deal with,” she said.

Special challenges for kids

The younger a person develops a certain disease, especially before puberty, the more severe the symptoms can be. And although genes can make people of any age more vulnerable to autoimmune diseases, other factors that stress the immune system are usually at play. infectious diseases, etc. To cause the onset of disease.

But Dr. Laura Levandowski of the National Institutes of Health, who is leading an international study of genetic changes that promote childhood lupus, said genes are more to blame when the disease develops early in life.

Symptoms in children can be subtle and difficult to identify. Rather than expressing joint pain, young children may walk with a limp or revert to crawling, Dr. Vasquez-Canizares said.

“Before, I seemed normal, like everyone else,” Dylan said. Then, “My face turned bright pink, and I started to like getting redder and redder.”

The family thought it must be an allergy, and Dylan recalled seeing many doctors before being diagnosed with lupus in January last year.

Treatment also presents unique challenges. Medications that suppress symptoms do so by suppressing the young immune system, which is just learning how to defend against germs. It can also affect whether your child builds strong bones.

Research underway to help children

But there is Promising treatments are under development. Seattle Children’s Hospital recently began the first clinical trial of something called CAR-T therapy for childhood lupus. These “living drugs” are created by reprogramming some of the patient’s own immune soldiers, T cells, to find and kill other types of B cells that might run amok. Testing for adults with lupus and other autoimmune diseases is showing early promise, allowing some people to go into long-term remission without drugs.

Also, autoimmune diseases in the mother can harm the child, such as a rare fetal heart defect, which may require a lifelong pacemaker if the baby survives. Dr. Jill Bouyon of New York University Langone Health is researching ways to block the defect and just reported a healthy baby girl born to a mother with mild lupus.

“This is a rare case where we know exactly when this happens,” said Dr. Philip Carlucci, a rheumatology researcher at New York University and a co-author of the study, adding that this provides an opportunity for prevention.

What happens: A type of antibody found in lupus, Sjögren’s disease, and certain other autoimmune diseases can damage the heart’s ability to beat properly if enough of it crosses the placenta during primary heart development. Some treatments can reduce the risk but cannot eliminate it. Buyon’s team is testing whether drugs used to treat other autoimmune diseases can protect fetuses more effectively.

Kelsey Kim jumped on an experimental treatment during her last pregnancy. “Partly out of a desire to save my baby, and part out of a desire to save other people’s babies and save them from the pain that I went through.”

Her first daughter was born healthy, but doctors failed to mention that the baby’s temporary lupus-related rash was a warning that future pregnancies could be at risk. Then, at 22 weeks pregnant, Kim lost her son to congenital heart block. My second daughter suffered minor heart damage, but thanks to a pacemaker, she is now a healthy 2-year-old.

Their third daughter was born healthy in June after Kim made weekly visits to New York University from her home in northern Virginia to obtain experimental drugs for about three months. No single case provides evidence, and Bouyon has received NIH funding to soon begin clinical trials for other high-risk pregnancies.

Helping children be children

Back at the sleepaway camp in New York, the goal was some normalcy for the children, who are subject to strict medication schedules that make it difficult to be away from their families.

“I kind of forget about it,” said Ethan Blanchfield Killeen, 11, of juvenile idiopathic arthritis, which is similar to rheumatoid arthritis in adults and causes stiffness and pain in the joints.

One day, a doctor examined the hand at the camp. Another day, he was running across the splattered grass in an intense game of paint tag.

“Just seeing them in a different light than in a sterile exam room brings tears to my eyes,” said Vazquez-Canizares, a rheumatologist at Montefiore.