Coping with a life of pain and stiffness, children with juvenile arthritis need a lot of support to keep their lives as normal and as active as possible
JUVENILE ARTHRITIS affects one in 1,000 people between the ages of three and 16 in Ireland. It is an illness more often associated with the elderly, but it is now as common as in children as childhood diabetes.
Despite this, there is currently only one consultant paediatric rheumatologist in Ireland to cater for these youngsters who live with constant pain in their joints and many other parts of their bodies.
There are more than 100 types of arthritis, the most common form in children being oligoarthritis (60 per cent). For three out of five children with oligarthritis, the joints affected at onset are primarily in the knee, ankle and wrist.
There is no cure for arthritis but with adequate care children with this type of the condition can go into remission as they grow older.
However, the remaining children suffer with “extended oligoarthritis” whereby the arthritis spreads to other joints after the first six months.
Though this is the mildest form of JA, it carries the highest risk of the development of eye conditions, which, at their most severe, can result in blindness.
There are no clear reasons why some children, more often girls, get JA. According to Dr Orla Killeen, consultant pediatric rheumatologist at Our Lady’s Children Hospital Crumlin: “Genes do play a role, but it’s only one of the many causes. JA is multi-factorial in origin and, unlike other illnesses, is not passed on.”
In primary school, there is an emphasis on the development of a young person’s fine motor skills as they learn to write. However, children with JA often find pencil grip difficult to achieve due to arthritis in their fingers. Holding a pencil can lead to tiredness, discomfort and pain.
In second-level schools, where students spend time going to and from lessons, those with JA may be unable to attend classes above ground level if there is no lift.
As a result, depending on the severity of the condition, the use of a computer, Dictaphone, adapted tables/chairs or a special needs assistant may be required to help the child.
For schoolchildren with JA, their lives both in and outside the classroom differ to the lives of their peers.
Even getting to school on time can be a problem for them as they suffer from stiffer joints first thing in the morning.
Activities such as running, dancing, and participating in sports days are all encouraged as they are very helpful in the treatment of arthritis.
Though friends of those with JA often spend their spare time on the playing fields, these youngsters frequently find themselves in hospital awaiting appointments and regular sessions of physiotherapy.
There is a current waiting list of 13 months for a first hospital appointment, which means more than a year of chronic pain, muscle pain and deformity.
“Sometimes in healthcare it is best to wait and see how an illness develops before starting treatment, but JA is different,” explains Lisa Mehigan, communications manager at Arthritis Ireland .
“Ensuring your child has the best treatment as soon as possible will slow down the disease and reduce long-term damage to his or her joints.”
According to Killeen, investment into the treatment of this debilitating condition in Ireland is not on par with other European countries.
With only one paediatric rheumatologist consultant, “we are ranked as having the second-lowest number of paediatric rheumatologists in Europe, behind all eastern European countries. We are entering our fifth year as a national service, and staffing for the required multidisciplinary teams remain inadequate, below 50 per cent,” she says.
Arthritis Ireland offers a primary support service for adults and children with arthritis and continues to engage in research to help find a cure for the condition.
“We are working to find a cure by committing to fund the establishment of three chairs of rheumatology over the next five years,” says Meighan.
“This will address the deficiency in undergraduate and postgraduate research in rheumatology in our universities, which will in turn have a direct positive impact on clinical services over time.”
For teenagers, however, having a condition uncommon to many their age can impact on them psychologically as well as physically.
There is always the worry about “looking different, short stature, joint deformities”, as well as “low mood, poor adherence to medication and the risk of alcohol and drug ingestion with those medications”, says Killeen.
Sometimes in these children, feelings of isolation and loneliness surface.
Killeen says this can lead to “high percentages never disclosing their illness to their teachers or peers”.
To address this, Arthritis Ireland recently launched “Friends Fizz”, an online chatroom for young people with JA.
Michelle Towey, juvenile arthritis programme co-ordinator at Arthritis Ireland, says this initiative will “re- inforce the vitality of young people with arthritis as opposed to the disability.
“It will give these teenagers the opportunity to talk freely, openly and without fear to other young people with JA about how their arthritis has affected their life.”
Arthritis Ireland’s helpline is on LoCall 1890-252846.
