Juvenile arthritis: The story of Alex
Alex’s own journey with juvenile arthritis became the basis for a comic book to help other children and their families understand how a normal childhood is possible despite the disease. Today, he is in medical school and aims to become a rheumatologist.
At the center of the comic book is Alex. His story is that of a typical young boy, about how he spent time with his friends and the adventures they shared throughout their childhood. Alex, however, was diagnosed with juvenile idiopathic arthritis (JIA) at 14 years old. “In my case, besides the inherent challenges of being a teenager, the biggest one in mine and my family's life was being diagnosed with this disease,” says Alex. “We were all surprised and as a family experienced lots of different emotions - denial, frustration, worry and anxiety - because it was something unknown, because we had no idea how to react, because we couldn't believe that our lives were going to change for ever. At first, I wasn't able to do any sports, and later on, I was unable to walk.”
Born out of a collaboration between the Autoimmune Diseases Patient Association (APAA) and Roche Pharma Romania, a comic book was developed to educate and inspire other children with JIA and their families. It has been distributed through libraries throughout the country and in offices of rheumatologists, paediatricians and immunologists.
At the heart of the comic book is the positive message around the possibility of leading a normal childhood. “These young people do not need to lead isolated lives and they should be accepted as part of the community that understands their suffering and supports them. This can happen with proper education and understanding of what juvenile arthritis is all about,” says Rozalina Lapadatu, President of the APAA.
Inspiration for the future
Today, Alex is a fifth year student of the Carol Davila University of Medicine and Pharmacy in Bucharest. “I was inspired by the disease and fascinated by biology. I took the decision to study medicine before my final year of high school,” says Alex. “I would like to put my medical knowledge into practice and help people to change their lives for the better.” Now 24 years old, he still hasn’t decided whether he wants to set up a non profit support group of his own, but is committed to continue working with the Romanian APAA and give talks to share his experience with other patients.
He is also grateful to his parents and believes that the family has an important role to play for all JIA children. “I am a single child. We fit the description of the classic ‘normal’ family. But my parents provided me with all the support that was needed when I was diagnosed with juvenile arthritis. I recommend to all parents facing the same situation to remain calm, seek help and ask questions - reach out to physicians, support groups and others who have gone through the same experiences.”