Did you know that there are 12,000 children and young people in the UK living with arthritis? My daughter Harriet is one of them.
For these children the condition can cause severe pain, fatigue and isolation, as well as a risk of developing inflammation in the eyes; all this while coping with the everyday challenges of growing up.
Yet arthritis is almost always viewed as just an older person’s disease – it’s tolerated and dismissed as something inevitable and untreatable – but arthritis doesn’t discriminate.
I know this all too well, as Harriet was just two when she was diagnosed with Juvenile Idiopathic Arthritis (JIA).
It was a battle to even get the diagnosis – we were told arthritis was so far down the list of possibilities for her symptoms that we shouldn’t give it another thought.
Treatments helped at first, but a few months later Harriet’s condition flared up aggressively and we struggled to control it.
She cried in pain at pre-school, she couldn’t take part in activities that other children could and saw so many different doctors that she became distrusting of leaving the house.
At its worst, I remember asking Harriet’s physiotherapist if there was anything I could do myself to help improve her mobility.
The answer involved numbing her foot in iced water and then manipulating it to get the joints moving again – not easy for a three-year-old in excruciating pain.
At this time, I also had a newborn and it was hard balancing everyone’s needs.
I realised it was up to us to fight this condition. Since then, I’ve become an advocate for living a positive life with JIA and I want to support other parents in similar situations.
The severe lack of recognition and awareness for arthritis, especially in younger people and children, means that many families struggle to get a diagnosis and are not aware of the support that is available to them.
When Harriet was eight, after a particularly aggressive flare up, she wanted to meet other children with JIA.
It proved difficult, so I was inspired to set up a local support group in London and got in touch with healthcare professionals and parents across the country to encourage them to do the same.
Two years later, my project, JIA Matters, is a network of online support groups, made up of nearly 1,000 families, one for each county across England and Wales.
And on 18 March this year, we officially joined forces with the Children’s Chronic Arthritis Association (CCAA) in order to better enable us to provide support for all JIA families.
It’s so important for families to be able to share their journeys and feel empowered when doing so.
I like to tell people that there is hope – with timely diagnosis and treatment it’s possible to live a full and active life with JIA.
Harriet doesn’t let anything stop her. She loves sport and seeing friends, and I think JIA has made her the determined character she is.
I have been moved by the support of charities like Versus Arthritis, who are part of the bigger picture in raising awareness of arthritis as a condition that affects us all.
The charity’s Young People and Families service supports 10-25 year-olds across the UK.
I’m also delighted to have taken part in an initiative this month known as World young Rheumatic Diseases (WORD) day, which aims to raise awareness of all paediatric rheumatic diseases in order to facilitate early diagnosis and prevent long-term damage.
We need to ensure that this is recognised at all levels of society, from researchers to clinicians to charities and governments, so that no one – parent or child – has to face arthritis alone.
Treatment and care for people with arthritis at all ages needs to be seen as a serious health priority.
If it was, maybe it wouldn’t have been so hard to get Harriet’s diagnosis and families like mine would find treatments that are right for them sooner.
The personal, economic and societal costs of arthritis are enormous – it affects over 10 million of us including children and young people.
But what I have learned is that once we speak out about arthritis, we’re already helping others and making that change happen.