Stricken with arthritis – when I was just three years old

I was three-years-old when my ankle swelled up unexpectedly one day. My mum, naturally, assumed I’d banged it.

When the swelling didn’t go down, a perplexed paediatrician had a plaster cast put on my leg from ankle to knee, hoping immobility would help.

The mystery swollen ankle wasn’t my only unexplained problem at that time. A few months earlier, my parents had noticed that my left eye looked different to my right one, and I couldn’t see out of it well. Again, even an eye specialist drew a blank.

But when I saw him while I had the plaster cast on, and he heard that the cause of my ankle problem was unknown, he diagnosed Still’s Disease – a form of juvenile rheumatoid arthritis (RA) which often affects the eyes as well as joints.

From then on, my young life involved weekly hospital appointments, long-term steroids and around 30 operations to inject steroids into my eye. I used a wheelchair sometimes, as the swelling progressed to both knees and, while I could walk, I couldn’t manage distances. I lost most of the sight in my left eye.

Like many children, by 14 I’d outgrown the juvenile RA, but it returned in its adult form when I was in my 20s with periodic flare-ups in both my knees and extreme fatigue.

Explaining I had arthritis was not always easy, since most people assume it’s an old person’s disease. That misconception is one of the reasons why the National Rheumatoid Arthritis Society is launching its first week-long awareness campaign.

While it’s true that osteoarthritis (OA) is linked to age, rheumatoid arthritis (RA) is an auto-immune condition, which means the body’s own immune system begins attacking healthy tissue.

It causes inflammation in the synovial capsule around the joints, which leads to pain and swelling. As well as that, RA is systemic, which means it affects many different parts of the body and like other auto-immune conditions, experts aren’t yet sure what causes the process to start. Genetic factors may increase a person’s chances of developing RA, though having a family member with the condition doesn’t automatically mean you’ll have it too – and it’s believed that a virus, trauma or extreme stress may sometimes act as triggers.

Professor David Scott, a consultant rheumatologist at Norfolk and Norwich University Hospital and NRAS chief medical advisor, says: “Until more is known about the causes, it would be difficult to identify any cure. But there’s a huge amount that can be done.”

Treated early and effectively, someone diagnosed today can live a relatively normal life. However, if left the impact can be devastating.

“People might struggle to open jars, pick things up or even walk, and the extreme fatigue can be terrible – you can have complete exhaustion where you feel you can’t even get up out of a chair,” says Tracey Hancock, a director of the NRAS. “The problem can be that people have a phase where they feel better, and think they can get lots done, but then the next day they can’t move.

“It’s a lifelong disease and you will live with it forever, but over recent years the treatments are so much better, and you may achieve drug-induced remission, which can make day-to-day life with RA much better.”

Around 690,000 people in the UK are currently living with RA and, though the most common age of onset is between 40 and 60, it can strike anyone. Around 12,000-15,000 children have been diagnosed with the juvenile strain.

Hancock says: “There’s a preconception about what arthritis is and that it affects elderly people. More people are referring to RA as just rheumatoid now, probably as a subliminal way of trying to say that it isn’t arthritis as most people perceive it.”

Indeed, an NRAS survey earlier this year found that only a third of people understood the difference between OA and RA.

Since my third pregnancy eight years ago, I’ve had no sign of RA at all. A specialist in the USA (who’s an expert in the effect of pregnancy on the condition) suggested that my seemingly miraculous remission may have been due to something called foetal microchimerism – where my baby’s genes passed into my blood, giving me some sort of immunity boost.

I don’t know if that’s definitely the case – but what I do know is that this is now the longest period of my life that I’ve been free of RA, and it’s a blessing.

Rheumatoid Awareness Week runs from June 24-30. For more information about rheumatoid arthritis visit www.nras.org.uk