Monday, 16 July 2018

The Juvenile Arthritis Research (JAR) Project - Did you know Children can have Arthritis too?

Richard and his daughter Trinity, who suffers from JIA

I’m so pleased today to be able to feature a guest post on my blog. I’m not sure how many years it is that I’ve known Rebecca from The Beesley Buzz blog, but it is a quite a number, and she is one of those women who never fails to inspire and have an encouraging word for everyone. Back in 2015 she discovered that her young daughter had Juvenile Idiopathic Arthritis and it has been harrowing to see what Trinity must go through to be able to live a (more) normal and pain reduced life.

I was so excited to hear from Rebecca back in January this year that her husband was taking an exciting (and of course scary) step by starting the Juvenile Arthritis Research project. Richard is doing something incredible to make a difference to the lives of children who suffer from JIA and I’m delighted to have him share with you here today. Really, did you even know that children could suffer from arthritis? I certainly didn’t.


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.

Many people are not even aware that children can get arthritis. Yet JIA affects around 15,000 children under the age of 16 in the UK. 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.

I founded Juvenile Arthritis Research (JAR) to find a cure for Juvenile Arthritis. With the support and endorsement of leading academic researchers, the JAR project works collaboratively yet independently to analyse data and information from a wide range of different scientific disciplines and research fields. By bringing together the disparate sources of information, we believe that we will be able to piece together the clues necessary to fully understand the disorder and develop a cure.


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:
o  Weekly injections of methotrexate, causing sickness and increasing the number of other illnesses and infections she suffers as her immune-system is reduced
o Folic acid supplements six days per week (to combat the side-effects of the methotrexate, such as hair loss)
o   Blood tests every 2 to 6 weeks (to monitor liver damage due to the methotrexate)
o   Physiotherapy exercises at home five times per week
o   Regular hydrotherapy sessions
o   Regular x-rays, ultrasounds, and MRIs of affected joints to monitor progress
o   Eye-drops during uveitis flare-ups
o   Antibiotics when infections set-in
o   Podiatry-prescribed insoles
o   Specially-fitted shoes
o   Use of a wheelchair during flare-ups
o   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
o   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

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.


Further information
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.

Thanks so much for sharing with us Richard. I think it is an amazing thing you are doing. Rather than sitting back and grumbling that your daughter has this awful disease you have taken a bold step to use your talents to help find a cure for all children affected. I'll be praying for your breakthrough and success in this area. God bless. 


-----------------------------------------------------------------
Thanks for reading, if you have enjoyed this post and want to stay up to date then 
 Subscribe to Mummy From The Heart... by Email or Follow on Bloglovin
Related Posts Plugin for WordPress, Blogger...