In the dark, still of the night, she moves to make herself more comfortable; she whimpers and cries out in pain. A dull, continuous, unrelenting pain. They try to comfort her but nothing seems to help, 'don't touch me' she screams and sobs. The following morning she limps, stiffly towards the bathroom, ready to face the day and all of the challenges it beholds.
The cause of such discomfort?
An invisible illness.
'You wouldn't know it by looking at her'...
'But she seems so well'...
Who is she?
An elderly woman or a young child?
'Children don't get rheumatoid arthritis, that's an old persons' disease!'
Sadly, babies, children and teenagers do get arthritis and it is often of unknown cause. The medical term coined for this condition is Juvenile Idiopathic Arthritis, or JIA.
Around 12,000 children and young people in the UK have JIA, which represents one child in every 1,000 under the age of 16 years. There are around 1,200 new cases of JIA diagnosed each year.
JIA is an autoimmune disease where the immune system attacks healthy joint tissue causing inflammation. This disease affects mainly the joints but is also known to affect the eyes.
The presenting symptoms persist for more than six weeks and can include (but are not limited to) pain, stiffness of the joint(s) particularly on waking or after a period of rest, the joint may appear hot and swollen and the child may be particularly tired and unhappy.
JIA cannot be diagnosed by means of a single test and often a range of investigations such as blood tests, slit light examination of the eyes, X-rays, computer tomography (CT), magnetic resonance imaging (MRI) and ultrasound scans are carried out to build a clear picture of the child's health.
There are seven different 'types' of JIA, Oligoarthritis, Polyarthritis (rheumatoid factor negative), Polyarthritis (rheumatoid factor positive), Enthesitis Related Arthritis, Psoriatic Arthritis, Systemic Onset JIA, and Undifferentiated Arthritis. Diagnosing the 'type' is not clear-cut as symptoms are known to overlap.
Depending on the stage or progression of the disease, different drugs can be prescribed to manage symptoms:
- Non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen are routinely prescribed to manage pain and inflammation associated with a flare.
- Corticosteroid preparations are also used to manage pain and inflammation and are available as joint injections, intramuscular injections, tablets, creams and eye drops.
- Disease Modifying Anti-Rheumatic Drugs (DMARDs) work to suppress the body's overactive immune and/or inflammatory system thereby reducing pain, swelling and stiffness. DMARDs also prevent damaging changes within the joints.
- Patients who do not have an adequate response to DMARDs are prescribed 'biologic' drugs which are targeted treatments against inflammatory modulators.
Hospitals are a daunting place for anyone, let alone a child, however, with JIA it is not uncommon for a child to have numerous appointments with their rheumatologist, physiotherapist, ophthalmologist, dietician, and should a DMARD or 'biologic' be prescribed, a phlebotomist.
JIA can have a huge impact on a child, their quality of life and on the lives of parents, cares and siblings. Daily life can be a struggle: swollen, painful joints make it difficult to carry out tasks such as getting dressed, writing, or playing sport. JIA also disrupts schooling as children need time off for hospital appointments and flare-ups of the condition.
For the first time this year, Buttercups Training will be supporting the campaign #WearPurpleForJIA on 7th June 2019.
#WearPurpleForJIA aims to raise awareness of JIA, offers support to children and families affected in addition to raising money for JIA-at-NRAS, part of the National Rheumatoid Arthritis Society.
#WearPurpleForJIA is intended to be a day of fun! Children are recognised and encouraged to embrace their condition whilst having the greatest fun possible with their family and friends.
The ultimate aim is to support children, young people and adults affected by JIA to live life to the full.