I’ve known Rebecca who blogs at The Beesley Buzz for a few years now and when she asked if she could write something for Raisie Bay I was happy to host. Rebecca discovered her young daughter had Juvenile Idiopathic Arthritis back in 2015. And now her husband Richard is doing something incredible to make a difference to the lives of children who suffer from JIA by starting the Juvenile Arthritic Research project.
I’ll leave it to Rebecca and Richard to explain….
We have loved reading Anne’s blog for so many years and one of the reasons that we keep coming back time and time again is because of Anne’s honesty when things are tough on the health front. Raising awareness of medical conditions, especially less common conditions, is so important – not least because others will know they are not alone when going through it themselves. Awareness can help early detection and diagnosis when symptoms first come about. Awareness can help with understanding and empathy. And so we were honoured when Anne agreed to host a guest post about Juvenile Arthritis. Despite affecting 15,000 children in the UK, many people are still not aware that arthritis can affect children.
What is Juvenile Idiopathic Arthritis (or JIA)?
JIA is diagnosed in children and young people under the age of 16, and is a different disease to adult-onset rheumatoid arthritis, and entirely different from age-related osteoarthritis. The term ‘idiopathic’ means that, despite a number of theories, the exact cause of JIA is currently unknown.
As we already mentioned, many people are not even aware that children can get arthritis. At present, there is no cure.
JIA is an autoimmune disorder where the body starts to attack the joints, causing inflammation, pain, discomfort and reduced mobility. Left unchecked, JIA can lead to other health conditions as the immune system attacks other organs, as well as permanent disability and long-term health implications. Many children with JIA suffer from uveitis, where the immune system attacks the eyes; if not stopped this can lead to permanent vision loss and blindness. Some forms of JIA lead to systemic inflammatory damage, where other organs are damaged and, in the most severe forms, this can be fatal.
Current treatments for Juvenile Idiopathic Arthritis
Nowadays there are a range of treatments available but no cure. The standard treatment is Methotrexate – a chemotherapy drug that works by reducing the immune system. This is often supplemented with other medications (such as painkillers and steroids) when required. However, methotrexate has side-effects and is not always effective. In fact, it is ineffective in treating JIA in around 35% of all patients. Where patients do remain on the drug, they often experience sickness (for which many take anti-sickness medications), hair loss, headache, mouth ulcers, and weakness. Methotrexate is also cytotoxic, and can cause liver damage for which regular blood tests are required.
Where children and young people are unable to take methotrexate, they may move on to ‘biologics’ – the next level of drugs. These work in a variety of ways, but all work to reduce the immune system.
As a result of having their immune system reduced, children and young people on anti-JIA medications are more likely to contract illnesses. Even relatively simple illnesses can become severe and life-threatening.
Prospects for children and young people with JIA
Around half of all children and young people with JIA will go into remission within ten years. However, the remaining half continue to suffer from the disease and need to take medication for life. This means that around 50% of all children diagnosed with JIA will continue to experience the negative symptoms of the disease, and the side-effects of the drugs, for their entire life.
What is life like for a child with JIA ?
Trinity is six years old. She was diagnosed with JIA when she was two. For her, JIA looks like this:
Weekly injections of methotrexate, causing sickness and increasing the number of other illnesses and infections she suffers as her immune-system is reduced
- Folic acid supplements six days per week (to combat the side-effects of the methotrexate, such as hair loss)
- Blood tests every 2 to 6 weeks (to monitor liver damage due to the methotrexate)
- Physiotherapy exercises at home five times per week
- Regular hydrotherapy sessions
- Regular x-rays, ultrasounds, and MRIs of affected joints to monitor progress
- Eye-drops during uveitis flare-ups
- Antibiotics when infections set-in
- Podiatry-prescribed insoles
- Specially-fitted shoes
- Use of a wheelchair during flare-ups
- Appointments with: paediatric consultants every three months: eye specialists every three to four months: paediatric physiotherapists every six months: podiatrists every six to nine months
- Regular admission to hospital with secondary illness and infections
Trinity’s experience is not uncommon but, in some ways, she is one of the ‘lucky’ ones as her JIA is currently responding to methotrexate and joint damage is currently being prevented.
All of this is to enable her to live as normal a life as possible. She is not alone. There are thousands of JIA patients across the country, all of them on similar treatment regimens to Trinity. A life of injections and treatment, hoping for remission but planning for a forever without it.
The Juvenile Arthritis Research (JAR) Project
In January 2018, Richard Beesley took a step of faith and founded Juvenile Arthritis Research in order to find a cure for JIA. Richard has a background in biomedical research from the Institute of Child Health, and experience in running clinical trials and research programmes, and has worked in research, project and programme management in a number of public and private sector organisations – most recently in local government. He is the father of Trinity, who has had JIA since she was two years old, and husband to Rebecca who had JIA from the age of ten some thirty years ago.
JAR has the support and endorsement, both in terms of our aims and methodology, from the leading research teams in academic research. Our aim is simple – to find the cure for juvenile idiopathic arthritis.
Juvenile Arthritis Research is a project of the Jabez Charitable Trust. This allows the project to continue with minimal administrative overheads whilst having the integrity and accountability of a registered charity.
You can find out more about Juvenile Arthritis Research, including ways you can get involved and support us, at www.jarproject.org. Even if you cannot get involved yourself, simply sharing this blog post will help take us a step closer.
May the charity go from strength to strength so that one day there is a cure. #BlogCrush
JIA sounds horrendous, but what a brilliant thing to do to start a research charity. Good luck to them all!
Thank you. We’re hoping that our work will help raise awareness of JIA as well as finding a cure for it.
Goodness me. How awful. I hope the JAR project is well-supported and successful in finding a way to cure or at least help reduce what children have to go through. #MixitUp
When I was growing up, I had a friend with Juvenile Arthritis and I remember she had to have a lot of time off school because she had to avoid coming into contact with so many childhood illnesses. I never realised this was due to the medication she was on rather than the actual condition, though. Thank you for raising awareness and I hope that a cure is on the horizon #blogcrush
Thank you. A lot of children and young people with JIA have to miss school – sometimes because of hospital appointments (there are a LOT of those), or because of infections due to the medications. Our whole family have to have flu jabs each year so we don’t get flu (hopefully) to protect our daughter from it… and she cannot have the live vaccine at school as she could get the flu from it (so we all get the jabs at the doctor instead). So many things to consider to try to protect her whilst helping her have as normal a life as possible.
Thank you for your support – we’re working on that cure!