Free Online Booklet ‘My JIA’ Serves as Guide for Children, Families, and Schools

Free Online Booklet ‘My JIA’ Serves as Guide for Children, Families, and Schools
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U.K. charity Juvenile Arthritis Research has published an informational booklet called “My JIA,” a resource for children with juvenile idiopathic arthritis (JIA), their families, caregivers, and schools.

The booklet, available online for free, addresses the difficulties that many face in finding and accessing information related to the condition. It is designed to serve as a comprehensive guide to living with JIA.

“Being told your child has juvenile idiopathic arthritis can be a particularly difficult time for families,” Richard Beesley, founder of Juvenile Arthritis Research, said in a press release. “Many people have not heard of the condition, and don’t know what to expect. We produced My JIA as a resource to help them.”

My JIA covers diagnosis, treatments, long-term aspects of living with juvenile arthritis, strategies such as physiotherapy, and the importance of exercise and healthy eating. According to the organization, all information in the booklet has been checked by a multidisciplinary team of health professionals, as well as by parents and patients.

In addition to youth diagnosed with juvenile arthritis, their parents, and caregivers, the booklet includes a section aimed at schools. Schools play a large role in the lives of patients, and staff often know little about the disorder, despite the likelihood of having students with JIA at some point.

Without education regarding JIA, children living with the disorder can be hard to spot. Symptoms often come and go intermittently, and a child that looks and acts like any other child one day may experience pain, fatigue, stiffness, and other symptoms the next.

It is important for children with JIA that school staff understand their condition and know how best to support them, such as through knowing a patient’s medications, being flexible on attendance, and by permitting children to move about during class.

The booklet is included in the charity’s Little Box Of Hope packs, given to newly diagnosed families through referral from a rheumatology team. There are also a limited number of print copies, although the organization can only mail them to U.K. addresses.

“We would love for families to download and share the booklet with their families, friends, schools and communities to help make life easier for children with arthritis,” Beesley said.

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
Total Posts: 11

José holds a PhD in Neuroscience from Universidade of Porto, in Portugal. He has also studied Biochemistry at Universidade do Porto and was a postdoctoral associate at Weill Cornell Medicine, in New York, and at The University of Western Ontario in London, Ontario, Canada. His work has ranged from the association of central cardiovascular and pain control to the neurobiological basis of hypertension, and the molecular pathways driving Alzheimer’s disease.

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Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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