Argentina: supporting children with juvenile arthritis
When a child is diagnosed with Juvenile Idiopathic Arthritis (JIA), it is not just the child that is impacted but the whole family. The limitations brought on by the disease have to be factored into every family decision as also ensuring that the child gets proper treatment and support. Roche Argentina developed a guide that helps those living with children with idiopathic arthritis to understand how to deal with the condition and to carry out day-to-day activities more effectively.
“It is one of our objectives to support and remain close to the needs of the patients and their families. With this in mind, for the past few years Roche Argentina has carried out different activities to reach out to all involved with arthritis,” says María Ana Luccioni, Rheumatology Franchise Manager.
Working with experts
One of the steps that needed immediate action was the availability of information that was easy to understand. With this in mind, the Roche team developed the “Juvenile Idiopathic Arthritis Guide” in consultation with the Pediatric Rheumatology Department of the General Children’s Hospital Pedro de Elizalde, one of the leading institutions in Argentina for the treatment of juvenile arthritis. The first edition was prepared three years ago.
The guide covered details about the disease, debunked myths and offered an idea of the real picture. In addition, it tried to explain other associated topics such as treatment, physical therapy, emotional support, day-to-day care and the role that the school, teachers and classmates could play.
Annual workshop for young patients
“Launching this guide gave rise to an annual workshop for young patients and their caregivers, organised along with experts from the hospital. They were designed to train and provide additional information for parents, other family members and teachers. This workshop has become extremely successful and we have run it now for three years,” says Lucas Najún Dubos, Country Medical Manager.
This year, the workshop was organised around the theme of JIA Olympics: a team in motion. This focused on the importance of physical activity and the role of the school. Children with arthritis attended the different sessions and activities with their siblings in order to bring about a better understanding of their special needs. “The message that needed to get across was that with proper care and understanding, these children could lead their lives like any other child does,” points out Jessica Claros, Public Affairs Manager.
Awareness programmes for adults
For adults with arthritis, workshops and special programmes have been conducted by Roche since 2009. This year, the focus was on women with arthritis, and 120 women from across Argentina participated. The sessions focused on promoting patient-doctor communication and raising awareness about the importance of comprehensive treatment. Experts showed the value of a programme based on physical exercise and proper diet in addition to medication. The effort was to offer to these women ways of mitigating pain and improving their quality of life.