[27 September 2021] A hurling legend and a writer and geologist are sharing their personal stories to raise awareness of a form of inflammatory arthritis that can take up to eight years to diagnose in Ireland.

Eight times All-Ireland winner, Michael Fennelly, and novelist, Amanda Geard, are supporting Back in Action, the new campaign from Arthritis Ireland, which aims to make people more aware of ankylosing spondylitis (AS).

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Ankylosing spondylitis mainly affects the spine, but can also cause pain and/or swelling in the shoulders, hips, knees, heels, chest/ribs and small joints of the hands and feet. While back pain is very common in the general population, only a small percentage of people will have inflammatory arthritis of the spine.

Former Kilkenny hurler and current Offaly manager, Michael Fennelly, was just 20 when he was diagnosed with AS and he has been living with the painful condition for the past 16 years. He initially found himself needing extra physiotherapy to ease his joints before training sessions and games. Over time, the stiffness and pain caused by AS in Fennelly’s back and neck began to create major difficulties, given the massive physical demands of the game.

“I’d see other players going to the gym and they were getting stronger and more powerful, and you know I’d be very competitive in that side of things. But I just had to kind of take a step back really and try and keep myself as healthy as I could for training and not be injured,” he explained.

He highlighted the importance of reaching out and asking for help. “I think sharing your story with someone is important. There are people who can help, there’s no point feeling sorry for yourself and asking the question ‘why me’.”

Tasmanian native, Amanda Geard (38), was 19 when her symptoms began. What started out feeling like a pulled muscle intensified to the point where she felt there was a knife stabbing into her lower back.

“When every single minute of every day is spent in pain you do let a condition like this define you,” she said.

While diagnosed with ankylosing spondylitis in Australia, the geologist and writer lived with chronic debilitating pain for 15 years before she finally found an effective treatment plan for managing her symptoms. Having moved to Ireland a number of years ago, she was referred to a consultant rheumatologist, which altered everything.

“It’s always a surprise every morning you wake up and you can get straight out of bed. My pain has decreased to the point that I could go for a run in the morning if I wanted to. That was completely unheard of for a decade and a half,’ she noted.

It’s not just in being more active that Geard has noticed a difference in her quality of life. “By decreasing your pain, you can also at times be a little less mobile, so you are able to sit at a computer without the pain in your pelvis consuming your mind rather than what’s there in front of you.” The writer has put that new freedom to good use in writing her first novel, which is due to be published in spring 2022.

Arthritis Ireland chief executive, Gráinne O’Leary, said: “Ankylosing spondylitis can have an enormous physical and emotional impact on people, which can disrupt every aspect of life. Symptoms of AS frequently begin in younger people, as early as the teenage years or 20s, so runs counter to the expectation that arthritis is an older person’s disease. Part of the complexity of the condition is that it can take years to diagnose. In fact, Irish data highlights an eight-year-delay in diagnosing axial spondyloarthritis.

“The situation is exacerbated by low levels of awareness of the condition, which is why campaigns such as this are important. As always, we encourage anyone who has concerns about their health, or is experiencing persistent pain or stiffness to seek medical advice.”

Support and information for people living with ankylosing spondylitis is available on the Arthritis Ireland website, www.arthritisireland.ie and via their helpline, 0818 252 846.

Back in Action is supported by Novartis.