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| 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.
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