Arthritis Kids South Africa was started by Diane Crossman in 2009. Di’s daughter had just been diagnosed with JIA and she found herself needing more information about the disease and wanting contact with parents in similar circumstances. By 2016, having invested thousands of hours into supporting parents and advocating for children with arthritis, Di and her crew, which by then included her daughter, were ready to take a break.
The current team of volunteers took over in 2017. Our board comprises paediatric rheumatologists and parents of children with arthritis, balancing the medical aspects of a chronic disease with the realities of living with one. Our daily interaction with children affected by this disease fuels our commitment to achieving our objectives.
Awareness of juvenile idiopathic arthritis (JIA) is understandably low among the general population. Unfortunately, this is also true for people who interact with children regularly, including teachers, sports coaches, and even some GPs, paediatricians, and allied health professionals like physiotherapists.
To find, diagnose and treat JIA, we first need to address this lack of awareness.
We speak on behalf of JIA patients and their families when they can’t. 25% of children with JIA will be resistant to standard treatments and will require an advanced medication called a biologic to manage their disease effectively; this is currently almost impossible in the public sector. Adding biologics to the Essential Medicines Lists across the country is a crucial advocacy project.
Other projects include engaging government to train additional paediatric rheumatologists and ensuring better access to essential allied healthcare services (i.e. physiotherapy).
Arthritis Kids SA works to enable patients and parents to navigate their new reality and to access support within communities and schools. We do this by compiling and supplying relevant information and through digital and real-life support channels.
Supported families don’t feel alone and are better able to cope emotionally and mentally.
Our daily interaction with children affected by this disease
fuels our commitment to achieving our objectives.
– In action –
Children with JIA must have access to their doctors as often as required. Financial constraints make this impossible for some families. We run a small transport fund that reimburses parents for travel costs to and from clinic appointments.
Up until recently, information about JIA was only available in English. We have translated some of our support material to isiZulu, Sepedi, and Afrikaans, allowing parents to learn about their child’s disease in a language of their choice.
Arthritis Kids South Africa is a non-profit company registered with SARS as a Public Benefit Organisation and with the Department of Social Development as a NPO. Our PBO status allows us to issue 18a certificates in respect of donations, as governed by the Income Tax Act (1962)