We need your help
We are the parents of a girl with SJIA (Systemic Juvenile Idiopathic Arthritis) commited to supporting research and making society aware that arthritis exists in children.
Before our daughter was diagnosed with arthritis we had no idea that this illness could appear at any age, we thought it was only seen in the elderly. In 2008, our youngest daughter, Ilana, at only 20 months old, was diagnosed with SJIA (systemic juvenile idiopathic arthritis). At that moment we realised that along with us most of our society had no idea that children could get arthritis too, so we decided to try and change that. Arthritis is a chronic, autoimmune disease that can lead to severe disability if not dealt with adequately.
At this moment in time there is no cure for arthritis. There are many diverse treatments to try to contain the illness but there is no cure. Ilana, just like many kids who suffer from JIA, had to go through many different kinds of treatment until coming up with a cocktail of biologic and disease modifying drugs that effectively control her illness but there are many others that aren’t as lucky. There are many who don’t respond to any kind of treatment. That’s why we feel that research is such a vital part of the fight against arthritis.
We can’t forget either that children, when it comes to research into new drugs, are quite literally at a disadvantage. There are hardly any clinical trials of new drugs carried out on children. Most of the drugs that children use are taken from tests carried out on adults but with special licenses given for use in children, leading to the uncertainty of the safety of many of these drugs.
As a result in 2009, we decided to start raising money with two main aims, help fund research and at the same time spread the word that children get arthritis too. We started to work as volunteers with Arthritis Research UK, a British charity that has been dedicated, since 1936, to finding the causes, treatments and a possible cure for arthritis. From there the marathons started, we also began organising summer fundraising lunches with a second hand toy market and raffle, and selling personalised paintings done by our children (Pinturas Solidarias). With the money raised we helped fund many different projects run by Arthritis Research UK.
Hope for the future
The moment has come to start lending a hand here in Spain and we’re going to do it hand in hand with the Spanish Paediatric Rheumatology Society (SERPE), offering research grants and training grants for professionals in the field of paediatric rheumatology. Early diagnosis is essential in kids with this type of illness and because of this we feel that training for our professionals plays a vital role.