| Children's Arthritis Trust (CHAT) |
Children's Arthritis Trust (CHAT) offers hope to kids crippled by arthritisIn October 2006 The Arthritis Foundation of South Africa launched a a special Children's Arthritis Trust called CHAT. Although there are no statistics in South Africa on how many children suffer from Juvenile Idiopathic Arthritis (JIA), recent figures from Australia put the incidence at one in every 250 children. Twenty percent of these children fail to respond to standard treatments used for controlling JIA and are doomed for a life of continous pain and progressive deformity. Fortunately, there is hope for this small group of treatment resistant children in the form of biologics. Described as 'miracle drugs' by rheumatologists, give both children and teenagers the chance of partial or even full remission even when they failed to respond to all other drugs. Developed six years ago, these remarkable drugs either halt or turn off the disease process in the children completely. Unfortunately, due to the expense of this high class of drug, biologics are not available in South Africa public healthcare for treatment of children and teenagers who critically need them. The Arthritis Foundation has been engaging in discussions with the Department of Health in order to persuade them to make biologics accessible for treatment resisitant children reliant on public healthcare. In the interim, The Arthritis Foundation urgently needs to raise funds to assist a few desperately ill children in state hospitals with biologics and whatever additional support they require. Although many children have growing pains, these have no relationship to juvenile arthritis, says Dr Gail Faller, a paediatric rheumatologist currently treating fifty children at Chris Hani Baragwanath Hospital in Soweto. Growing pains are a form of musculoskeletal pain that occurs in young children, peaking at four to five years of age. These occur only at night, usually behind the knee or in the leg. The pain can be relieved by gentle massage and by giving a mild painkiller like Panado. It is self-limiting and does not require any treatment. Pain that occurs during the day is not due to growing pains! With juvenile arthritis, joints may suddenly swell and remain enlarged. Stiffness in the neck, hips or other joints can also occur. Rashes may suddenly appear and disappear in different areas. High fevers that spike in the evenings and then disappear are characteristic of systemic juvenile arthritis. The earlier a child with sore or swollen joints is examined, the more positive the outcome of treatment is likely to be, says Dr Faller. If a child complains about a sore joint for more than two weeks, than seek help immediately, she cautions. Unfortunately, many children habituate themselves to constant chronic pain. So when they complain less frequently, parents often make the mistake of thinking they are better. When children with juvenile arthritis have flares, or do not respond adequately to standard drugs, they experience intense pain and stiffness, and all their daily activities are affected. According to Dr Faller, They will struggle to turn on a tap, open a jar, get out of bed and put on their shoes. Handwriting is difficult and they become stiff when sitting in class or at a movie. To top it all, they are even teased by their peers, and sometimes their teachers, who accuse them of being lazy, clumsy, slow and uncompetitive. For treatment resistant children, biologics offer real hope. Developed six years ago, they target individual cytokines or molecules involved in the complicated process of inflammation, either halting, or completely turning off the disease process. The downside is their expense, with annual treatment per child costing up to R80 000 per annum. The cost does, however, drop significantly when the child goes into remission. Over the course of this year, The Arthritis Foundation will be engaging in talks with the Department of Health to persuade them to make biologics accessible for extreme cases. In the meantime, significant funds need to be raised by CHAT in order to help the critically ill children until the State is able to do so. How you can help a child crippled by arthritisYou can help one of the treatment resistant children in public healthcare to walk and run again by making a donation to CHAT :
Standard treatment for children with juvenile idiopathic arthritisAlthough treatment for juvenile idiopathic arthritis depends on the type of arthritis the child has, most children with JIA start out on a NSAID (non-steroidal anti-inflammatory drug) like brufen, or voltaren, used to control both pain and inflammation. Thereafter, they will take a disease modifying drug (DMARD). These include methotrexate (also a commonly used cancer drug), sulfasalazine, hydroxychloroquine (also used in malaria), and cortisone. Regular blood tests will be taken to monitor the side-effects of these drugs. Cortisone has severe side effects when used in high doses and for prolonged periods. Children may also need injections of cortisone into their joints for local control. In the case of small children, hospital admission is needed for a day as the procedure is done under general anaesthetic. If a child does not go into remission with disease modifying agents, or becomes dependent on cortisone for the control of the arthritis, then biological drugs such as etanercept (Enbrel), and infliximab (Revelex) become necessary. All children will also be referred for physiotherapy, occupational therapy and a podiatry assessment. support groups for parents and caregiversIt is often devastating for a family to be confronted with a diagnosis of juvenile arthritis. Many families feel isolated and face the future alone and with fear. This is where a support group can help. Parents who would like to start or join similar groups in other areas of the country are invited to phone The Arthritis Foundation Helpline on 0861 303030 |