Amanda Geard lived with chronic pain for years before she received a diagnosis of ankylosing spondylitis. She shares the impact it had on her life, the top-class treatment she received and why she’s keen to bring greater awareness to the little-known condition
What started out as a niggle was the beginning of a debilitating condition that left Amanda Geard, now 38, wondering if she’d spend the rest of her life in pain. When she looks back, she realises that the twinges she first felt at the back of her pelvis were the beginnings of a storm in her life. Soon the oncoming waves of pain became so strong that she was left immobilised.
It would be years before she was diagnosed with the relatively rare form of arthritis known as ankylosing spondylitis (AS) and over a decade before she got the correct treatment. Finding the right doctor and being put on a treatment plan has turned her life around but she knows that unless people get the diagnosis and treatment they need, their quality of life can deteriorate.
AS is a chronic autoimmune disease that primarily affects the spinal joints. Persistent pain and stiffness are its hallmarks. Inflammation, resulting from the immune system activity, causes inflammation in sections of the spine, which often leads to pain, swelling, and stiffness. This can limit mobility, making it difficult to complete everyday tasks.
While there’s no cure, different treatments can slow its progression and help sufferers live an active life. The sooner a person is diagnosed, the sooner their treatment plan can be put in place with massive implications for their quality of life.
With data from Arthritis Ireland showing an eight-year delay in diagnosing the condition, it is launching a campaign called ‘Back in Action’ to raise awareness of AS. Arthritis Ireland chief executive Gráinne O’Leary says symptoms of AS frequently begin in younger people, as early as the teenage years or 20s, which counters the thought that arthritis is an older person’s disease.
For Amanda — who runs a geology consultancy with her husband Barry in Sneem, Co Kerry — it has been a long road back from the constant pain she lived with for years. An active youth and teen, she played hockey and was an accomplished runner growing up in Tasmania. Her work meant travelling the world and it wasn’t unusual for her to be found in the middle of the Congolese jungle or taking wilderness guiding courses in Finland.
But by her early 20s she found that the niggling pain she was regularly experiencing wasn’t going away. In fact, it was getting worse. She thought she had pulled a muscle but it wouldn’t get any better.
When she went to her GP in Tasmania she was given a pack of anti-inflammatory tablets and sent on her way. While the pain decreased after taking the anti-inflammatories, there were no answers or any explanation of the root cause of her pain. Throughout her 20s the pain came in what she calls flare-ups. Amanda recalls occasions when she’d go for a walk only to become completely immobilised by pain and have to call someone to come and pick her up.
She says: “It was like a stab and the pain felt like a 12 out of 10. I had given up on team sports. I’d played hockey but I remember by the end I was head to toe in strapping tape and was on anti-inflammatories. I was losing a lot of hope.” Amanda recalls that her darkest days were just before her diagnosis.
“There was a sense of relief that the beast had been named even though I hadn’t heard of it before,” she adds. The name ‘ankylosing spondylitis’ didn’t seem to have any place in the life of a young woman. But she’s since learned the onset of the condition comes when many of those affected are in their teens or 20s.
Despite the fact that she had a diagnosis, Amanda says it was many years before she found a GP who she felt listened to her and who referred her to a rheumatologist for treatment. This only happened when she moved to Ireland and she’d been experiencing debilitating pain for 15 years before she eventually saw light at the end of the tunnel.
“I think telling your story makes people feel less alone. And you do feel really alone. I was always scouring the newspaper for stories of people with this condition. When you find these stories of inspiration, it helps,” says Amanda.
After seeing her GP in Kerry, Amanda was put on a waiting list to see a rheumatologist. After a wait of over a year she was taken under the care of a rheumatologist at Kerry University Hospital.
She says: “We had a long chat. He looked at me as a person. From there, he created a treatment plan. From the first treatment plan, my pain levels decreased.”
That treatment involved taking a biologic medication which Amanda self-injects every couple of weeks. “I can’t express how different it is now. The condition ruined my life. I was afraid to go on a long journey on a plane because I wouldn’t be sure I’d be able to get up. I’d try and do yoga but I’d get stuck on the ground. I couldn’t sleep on my back. If I moved, I’d wake up.
“With AS, the idea is to always keep the spine moving and keep moving as much as you can. But by the time I’d get up I’d be exhausted. You’d know you’d have to go for a walk and that was exhausting too.
“When you’re in pain all the time it’s emotionally hard. I’m a lot easier to be around and I’m a lot more relaxed. It’s given me my mobility back,” says Amanda of her treatment regime.
Hand in hand with treatment, she now includes exercise in her daily schedule, walking and swimming regularly. She hopes to start training for triathlons next year and has just finished her first novel, something she’s been working on steadily over the past year. All of these things would have been impossible before, she says.
According to Dr Barry O’Shea, consultant rheumatologist at St James’s Hospital in Dublin, AS affects around 0.1 pc of the population with between 4,000 and 8,000 people affected here. Despite the fact that it is a chronic condition, he says the pain associated with AS is very treatable and manageable. “To make it manageable should be possible. There is frequently a long delay in diagnosis because it’s a rare condition and back pain is very common when people go to their GP,” he says.
Dr O’Shea points out that the characteristics of AS are different to other kinds of back pain. “The symptoms that make my ears prick up are early morning stiffness or where people hate staying still,” he says. He recognises AS patients as the ones pacing the floor in the waiting room.
Taking a history from the patient, doing blood tests, conducting X-rays and in some cases an MRI to get a closer look at the bone marrow is how the condition is diagnosed, not just by looking at one thing in isolation.
Treatment is prescribed depending on the patient’s level of symptoms, but Dr O’Shea points out that a good exercise regime is really important for people with the condition. “If you don’t keep your back strong, that’s going to increase your chances of fusion,” he says.
While anti-inflammatory medication can play its part, biologic medication has been a game changer for patients with more severe pain and stiffness. This is a targeted treatment that works by blocking out the inflammation, according to Dr O’Shea, who is also a co-founder and principal investigator of ASRI — the Ankylosing Spondylitis Registry of Ireland, a national database of patients with AS from across the country.
Amanda still can’t believe how her life has turned around since she was put on her personal treatment plan. She says it’s taken her some time to trust her body again after being in pain for so long. When she wakes up in the morning, it’s still a shock to her at how good she feels. And after pushing herself away from people emotionally as a result of her condition, she now finds herself saying yes more often.
“I remember when we first moved to Ireland to such a wonderful community, I had lots of invites for coffee and to do things like couch to 5K. I would’ve jumped at all these things but I remember always making excuses,” says Amanda.
She’s now embracing these aspects of community life; joining other women for beach yoga and going for a jog with friends. Her advice to others is not to delay if they’re experiencing ongoing pain.
“I really want to stress that if people out there have this unexplained pain in their lower back or pain that won’t simply go away, then they need to go to their GP. They need to get answers,” she says.
For more information on the Back in Action campaign see arthritisireland.ie