Nineteen teenagers with Juvenile Idiopathic Arthritis (JIA) or childhood arthritis attended the JIA Independence Camp held on 7-9 December 2012 at the Klana Resort Seremban, Negeri Sembilan.
The camp, held for the third time since 2006, was targeted at improving disease knowledge and independence skills among children as they approach adulthood.
“Many of the children, aged between 10-20 years, have been living with JIA since they were young. They often had to miss school and outdoor activities because of their joint pains and inflammation,” said Dr Tang Swee Ping, consultant paediatric rheumatologist from Selayang Hospital.
Parents of children with JIA have a tendency to be over-protective of their children, banning physical activities out of concern that the exertion may bring about more pain the following day or potential disability, she adds.
As a result, many of the children suffer from low self-esteem and confidence levels, particularly if they come from families who are not supportive.
“Awareness of JIA has been slowly increasing in the last few years and newer treatment modalities have saved the joints of many young patients from deformity. However, it is important for patients to know how to manage their own condition as they grow up, because their parents cannot be taking care of them forever,” Dr Tang points out.
LEARNING ABOUT ARTHRITIS
The Independence Camp, modeled after similar programmes in the United Kingdom, offered a combination of educational sessions and outdoor activities.
Educational sessions led by Dr Tang and fellow consultant paediatric rheumatolgist Dr Cham Weng Tarng provided participants a better understanding of JIA, medications, management of side effects and future outlook such as career choices, marriage and starting a family.
Also present was Charlie Tan, an occupational therapist from JRC Rehabilitation Centre, who demonstrated Therapy Taping, the latest advancement in joint therapy, while Chan Li Jin from parenting2u, a non-profit organization, conducted an uplifting session on self-belief.
An art session, part of the recently concluded Fly My1Dream programme, was also conducted by pharmaceutical giant Abbott. The art pieces that were painted by the young patients will be compiled and displayed at the paediatric department of Selayang Hospital.
The highlight of the three-day camp was the outdoor activities which included Flying Fox, rafting, rappelling and obstacle courses, which proved to be effective confidence boosters for the participants.
“Most of the children never had the chance to try these activities and their parents only allowed them to participate knowing they will be supervised by healthcare professionals. It helped the children feel they are capable of doing the things other children do. The team-building activities also made them feel less alone and isolated in their battle against JIA,” says Dr Tang.
Klana Resort Seremban subsidized part of the camp’s costs, while other corporations such as Pfizer, Blackmores, Roche and Sterimar contributed to the goodie bags to make the trip more memorable for the participants.
Tuan Haji Danny Malik, General Manager of Klana Resort, expressed surprise to hear that children could also get arthritis, a disease commonly associated with the elderly.
“We’re sorry to know about these children’s condition and feel glad that we could play a part in helping these children gain confidence in themselves. Independence and mobility is something we so often take for granted; it is gratifying to be able to offer it to someone else, especially these special children,” he said.
Compliance to medication and joint care practices were important elements of the camp as they kept the disease from causing further damage, at the same time, keep symptoms in check so that the children could function like normal without pain, stiffness and disability.
Have a child with JIA? Visit the newly-formed Facebook page www.facebook.com/afm.jia to find support and connect with other JIA patients.
* Names changed to protect privacy