Dynamic high school counsellor, Daniella Badenhorst from Somerset College, and dedicated paediatric rheumatologist, Dr Chris Scott, have joined forces to raise funds for children facing life-threatening forms of juvenile arthritis.
They have also made it their mission to educate the general public about the ravages of this destructive and crippling disease.
As wounded healers, both Badenhorst and Scott suffered as teenagers and young adults from autoimmune illnesses. Badenhorst has Crohn’s Disease, an inflammatory condition affecting the digestive tract; Dr Scott is affected by Ankylosing Spondylitis, or arthritis of the spinal joints.
After many years of considerable suffering and physical debilitation, both Badenhorst and Scott owe their phenomenal recoveries to biologic therapy. They are therefore determined to fundraise and create awareness for children with treatment resistant arthritis whose recovery depends on early diagnosis and appropriate therapy.
This year, Badenhorst, Dr Scott and a support team entered the Two Oceans and Knysna Marathons in order to raise funds for three-year old Mila *, who suffers from systemic juvenile idiopathic arthritis. Badenhorst also motivated the high school students at Somerset College to hold a high profile Zumbathon Competitionas a further fund raising initiative.
Mila first became ill when she was just two years and eight months old, with her first symptoms being inexplicable, ongoing fevers and swollen and painful knees in the morning. She was diagnosed with systemic juvenile idiopathic arthritis. “This is the most serious form of arthritis in children,” says Dr Scott, “as it affects organ systems, causing fever, swollen glands, skin rash, and an enlarged liver and spleen. It is very difficult to treat and it can lead to fatal complications.”
Mila did not respond to standard treatment and her mother, Brigitte, comments that there was “a steady decline in her health, getting to the point where she couldn’t walk or play any more, and we would have to carry her. The hardest part was seeing Mila deteriorate… to see the pain on her face, even when she slept. “
Dr Scott treated Mila “with at least eight different drugs.” However, she remained dangerously ill until a new, imported biologic was tried as a last resort, and she miraculously responded.
“We are truly amazed at the complete u-turn,” says Brigitte. “She no longer walks… she runs! She is now doing everything a normal three year old child should be doing and at last she is a happy, jumping, laughing and playful child. She even went back to school and is loving it!”
The downside is the cost of Mila’s medication, currently being approximately R8000 per month.
As a psychology masters student doing her dissertation on children with autoimmune illness, Badenhorst was determined to help the parents of children like Mila cover the costs of lifesaving medication. In addition to her own efforts, she also motivated the students at Somerset College to join forces with her and Dr Scott.
All the girls and teachers in the senior school will be paying for Zumba classes and participating in the Zumbathon Competition on July 20th. The Zumbathon will be staged as an evening event; with tickets costing R50 per person and wrist bands R10 each.
Badenhorst comments that, “This project has changed the kids at the school and made them look at the world through different eyes. They now know what paediatric arthritis is and how severely it affects children.”
According to Dr Scott, “We do not have reliable statistics on the number of children and teens suffering from juvenile arthritis in South Africa. However, a reliable study conducted in Australia found that one in 250 Australian children had arthritis and the prevalence is probably similar in South Africa. With a population of approximately 48 million people, it is likely that up to 60 000 children suffer from some form of arthritis. We simply don’t know where these children are, how many have been diagnosed, or are receiving appropriate treatment.”
You can help children with arthritis by attending the Somerset College Zumbathon on July 20th. To obtain tickets, contact Dani Badenhorst on email@example.com or Cell: 082 434 9377. If you would prefer just to make a donation, please phone The Arthritis Foundation helpline on 0861 30 30 30, or email firstname.lastname@example.org.
Symptoms and treatment of juvenile arthritis
The first symptoms of juvenile idiopathic arthritis may include limping or a sore wrist, finger or knee. 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 Gail Faller, a paediatric rheumatologist at Chris Hani Baragwanath Hospital in Soweto. “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. “
Although treatment for juvenile idiopathic arthritis depends on the type of arthritis the child has, most children with JIA start out on 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. These include methotrexate (also a commonly used cancer drug), sulfasalazine, hydroxychoroquine (also used in malaria), and cortisone. Regular blood tests will be taken to monitor the side-effects of these drugs.
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 for a podiatry assessment.
Information compiled for The Arthritis Foundation of South Africa by Linda Trump of Cat Communications.
* Mila’s family have requested that her surname is not publicised.
Juvenile arthritis and educators
JA and children