Children’s Book is Valuable Resource for Youngsters with Lupus
A children’s book published by Hospital for Special Surgery (HSS) for youngsters with lupus not only explains the illness, but offers a message of encouragement and hope. It has received excellent reviews from health professionals around the country who are providing the book to their patients.
Judy Campbell, a volunteer at HSS who herself has lupus, wrote it. The hospital’s Department of Social Work Programs approached her about the project when they learned she had written a children’s book some years back. “Chita Shares a Secret,” geared toward ages 6 to 11, explains lupus in terms a child could understand. The story comes alive with a cast of jungle characters and bright, colorful illustrations.
Ms. Campbell says she aimed to convey a positive message for young patients – and their parents – so they would gain the courage to cope with a difficult illness. “I set out to write a positive, upbeat book that would provide a message that it’s OK to have lupus,” Campbell explained.
Lupus causes the body’s immune system, which is supposed to protect us from illness and infection, to attack healthy cells and organs. It affects people differently and is often unpredictable. Common symptoms include fatigue, headaches, joint pain or swelling, and a rash on the face or elsewhere on the body. In severe cases, it can affect the kidneys, heart and lungs.
The book has been well-received by pediatric rheumatologists at HSS and other hospitals around the country. “I love it. It is bright, cheerful and easy to read, but addresses a really big problem,” said Karen Brandt Onel, MD, chief of the Division of Pediatric Rheumatology at HSS. “Kids are so afraid to share with their friends, as they think they will be rejected. The book just tackles it right on.”
Research shows that children are being diagnosed with lupus at a younger age, and there are limited age-appropriate resources to educate them and their families about the condition, according to Priscilla Toral, manager of LupusLine® at HSS, which provides free telephone counseling for people with lupus and their families. “The book provides physicians and the healthcare team with an age-appropriate tool to discuss a diagnosis of lupus, its symptoms and treatment with young patients,” she said. “Adult lupus patients can also use the book to explain their condition to their children.”
The book helps young lupus patients come to terms with a new and difficult diagnosis, while giving them the courage to broach the subject with their family and friends, says Sarah Faith Taber, MD, pediatric rheumatologist at HSS. “It is written in straight-forward, basic language that even young children can understand and illustrated with eye-catching, engaging drawings,” she explains. “Families have been delighted to receive it."
HSS patient Elizabeth Lopez, who was diagnosed with lupus at age 11, said she showed the book to her friends to help them understand her illness.
Campbell, the author, understands lupus all too well. She was diagnosed in her 40s after years of doctor visits to determine what was causing her symptoms. She found a physician at HSS and firmly resolved to live a full and happy life. She has pushed through flare-ups, pain and several surgeries. Instead of dwelling on her illness, she considers herself fortunate for the many opportunities she has had throughout her life. And happy with the care she received at HSS, she says she wanted to give back.
Hospital for Special Surgery has printed more than 1200 copies of the book over the past year for health professionals and lupus organizations nationwide that have requested hard copies. The costs of production, printing and mailing are paid by HSS. The book is also available for everyone to download https://issuu.com/hospital-for-special-surgery/docs/social-work-chita-shares-a-secret
Comments from recipients around the country show it has made a difference. “This is a wonderful resource; we use them (the books) for our patients and include them in our new patient packets,” wrote Duke Pediatric Rheumatology staff. “The story made me cry,” said a health professional at Seattle Children’s Hospital.
The story takes place in the jungle, where a cheetah named Chita has lupus. Dr. Hippopotamus is the kindhearted physician who explains the disease and gives good advice. Chita is sometimes too tired to play with her jungle friends and is afraid, at first, to tell them about her illness. She finally explains her symptoms to her friends and answers their questions. The animals are all very supportive, providing a message of acceptance and encouragement. In the end, they give Chita a tee shirt that says “Chita the Brave.”
Clever illustrations make the story come alive. “The author wanted to convey a sense of belonging and security,” explains Steven Portera, executive producer in the Creative Services Department at HSS, who illustrated the book. “I know firsthand how hard it is to be a kid with a chronic illness and how difficult it can be most times to blend in with your friends. If this project helps just a few kids feel a little better, then it’s all worthwhile.”
HSS is the world’s leading academic medical center focused on musculoskeletal health. At its core is Hospital for Special Surgery, nationally ranked No. 1 in orthopedics (for the tenth consecutive year), No. 3 in rheumatology by U.S. News & World Report (2019-2020), and named a leader in pediatric orthopedics by U.S. News & World Report “Best Children’s Hospitals” list (2019-2020). Founded in 1863, the Hospital has one of the lowest infection rates in the country and was the first in New York State to receive Magnet Recognition for Excellence in Nursing Service from the American Nurses Credentialing Center four consecutive times. The global standard total knee replacement was developed at HSS in 1969. An affiliate of Weill Cornell Medical College, HSS has a main campus in New York City and facilities in New Jersey, Connecticut and in the Long Island and Westchester County regions of New York State. In addition, HSS will be opening a new facility in Florida in early 2020. In 2018, HSS provided care to 139,000 patients and performed more than 32,000 surgical procedures, and people from all 50 U.S. states and 80 countries travelled to receive care at HSS. There were more than 37,000 pediatric visits to the HSS Lerner Children’s Pavilion for treatment by a team of interdisciplinary experts. In addition to patient care, HSS leads the field in research, innovation and education. The HSS Research Institute comprises 20 laboratories and 300 staff members focused on leading the advancement of musculoskeletal health through prevention of degeneration, tissue repair and tissue regeneration. The HSS Global Innovation Institute was formed in 2016 to realize the potential of new drugs, therapeutics and devices. The HSS Education Institute is the world’s leading provider of education on musculoskeletal health, with its online learning platform offering more than 600 courses to more than 21,000 medical professional members worldwide. Through HSS Global Ventures, the institution is collaborating with medical centers and other organizations to advance the quality and value of musculoskeletal care and to make world-class HSS care more widely accessible nationally and internationally. www.hss.edu.