The first troubles were the beginning of a disease that debilitated Amanda Geard, 38, and wondered if she would spend the rest of her life in pain. When she looked back, she realized that the first tingling she felt in the back of her pelvis was the beginning of the storm in her life. Soon, the oncoming wave of pain became so strong that she couldn’t move.
She was diagnosed with a relatively rare arthritis called ankylosing spondylitis (AS) that took years and more than ten years before she received the correct treatment. Finding the right doctor and developing a treatment plan has changed her life, but she knows that unless people get the diagnosis and treatment they need, their quality of life may deteriorate.
AS is a chronic autoimmune disease that mainly affects the spinal joints. Constant pain and stiffness are its hallmarks. Inflammation caused by immune system activity can cause inflammation of the spine, which usually causes pain, swelling, and stiffness. This restricts mobility and makes it difficult to complete daily tasks.
Although there is no cure, different treatments can slow its progress and help patients lead an active life. The sooner a person is diagnosed, the sooner their treatment plan can be put in place, which has a huge impact on their quality of life.
Data from Irish arthritis shows that the diagnosis of this disease has been delayed by eight years, so it is launching a campaign called “Recovery Action” to raise awareness of AS. Gráinne O’Leary, CEO of Arthritis Ireland, said that AS symptoms often appear in young people, as early as their teens or 20s, which is contrary to the idea that arthritis is a disease of the elderly.
For Amanda—she and her husband Barry run a geological consulting company in Sneem, Cokere—have come a long way to recovering from the pain she has endured for years. As an active youth and teenager, she plays hockey and is an accomplished runner who grew up in Tasmania. Her job means traveling around the world, and it is not uncommon for her to find her in the Congolese jungle or take a wilderness coaching course in Finland.
But when she was in her early 20s, she found that the trivial pain she often experienced had not disappeared. In fact, the situation is getting worse. She thought she had strained a muscle, but the situation would not get better.
When she went to see her GP in Tasmania, she received a packet of anti-inflammatory drugs and was sent there. Although the pain eased after taking anti-inflammatory drugs, there was no answer or any explanation for the root cause of her pain. Throughout her 20s, she called it sudden onset of pain. Amanda recalled how she had to call someone to pick her up when she went for a walk because she was completely unable to move due to pain.
She said: “It’s like tingling, the pain feels like 12 out of 10 points. I have given up team sports. I played hockey, but I remember that in the end I tied tape from head to toe and took anti-inflammatory drugs. . I lost a lot of hope.” Amanda recalled that her darkest days were before the diagnosis.
“Although I haven’t heard the name of this beast before, I was relieved,” she added. The name “ankylosing spondylitis” seems to have no place in the lives of young women. But she later learned that when many of the affected people are in their teens or 20s, the illness will break out.
Although she was diagnosed, Amanda said that she only found a general practitioner many years later. She thought she listened to her and referred her to a rheumatologist for treatment. This only happened when she moved to Ireland, she experienced 15 years of weakness and pain, and finally saw the light at the end of the tunnel.
“I think telling your story will make people feel less lonely. And you do feel lonely. I always search the newspaper for stories about people with this disease. When you find these inspirational stories, it will It helps,” Amanda said.
After Carey saw her GP, Amanda was placed on the waiting list for a rheumatologist. After more than a year of waiting, she was taken care of by a rheumatologist at Carey University Hospital.
She said: “We talked for a long time. He treated me as a human being. From there, he made a treatment plan. From the first treatment plan, my pain level eased.”
This treatment involves taking a biological drug, which Amanda self-injects once every two weeks. “I can’t express how different it is now. This situation ruined my life. I was afraid of flying on long trips because I was not sure if I could get up. I wanted to try yoga, but I would be trapped on the ground. I cannot sleep on my back. If I move, I will wake up.
“For AS, our idea is to always keep the spine moving and move as much as possible. But when I get up, I’m already exhausted. You know you have to go for a walk, which is also exhausting.
“When you have been in pain, emotions become very difficult. I’m easier to be around and I’m more relaxed. It regained my mobility,” Amanda said of her treatment plan.
While treating, she now incorporates exercise into her daily schedule, walking and swimming regularly. She hopes to start participating in triathlon training next year and has just finished her first novel, which is what she has been doing steadily in the past year. She said that all these things were impossible before.
According to Dr. Barry O’Shea, a rheumatology consultant at St. James’s Hospital in Dublin, AS affects approximately 0.1% of the population, with 4,000 to 8,000 people affected here. Although it is a chronic disease, he said that the pain associated with AS can be treated and controlled. “It should be possible to make it easy to manage. Diagnosis is usually delayed for a long time because this is a rare disease and back pain is common when people go to a GP,” he said.
Dr. O’Shea pointed out that the characteristics of AS are different from other types of back pain. “The symptoms that make my ears stand up are stiffness in the morning or people hate being still,” he said. He recognized AS patients as people pacing in the waiting room.
Obtaining a medical history from the patient, performing blood tests, performing X-ray examinations, and in some cases, performing MRI to carefully observe the bone marrow. This is a way of diagnosing the condition, not just observing one thing in isolation.
Treatment is prescribed based on the patient’s level of symptoms, but Dr. O’Shea pointed out that a good exercise program is very important for people with this disease. “If you don’t keep your back strong, it will increase your chances of fusion,” he said.
Although anti-inflammatory drugs can do their job, biologic drugs have changed the rules of the game for patients with more severe pain and stiffness. According to Dr. O’Shea, this is a targeted therapy that works by blocking inflammation. He is also the co-founder and lead researcher of ASRI (Ankylosing Spondylitis Registry of Ireland), a database that targets people from all over the world National database of AS patients. nation.
Amanda still can’t believe how her life has changed since she accepted the personal treatment plan. She said that after experiencing such a long period of pain, it took her some time to trust her body again. When she woke up in the morning, she was still shocked at how well she felt. Due to her condition, after moving herself away from others emotionally, she now finds herself saying “yes” more often.
“I remember when we first moved to Ireland to such a wonderful community, I received a lot of invitations to drink coffee and make sofas to 5K and things like that. I would jump on all these things, but I remember always It’s an excuse,” Amanda said.
She is now embracing these aspects of community life; participating in beach yoga with other women and jogging with friends. Her advice to others is that if they are experiencing constant pain, don’t delay.
“What I really want to emphasize is that if people have this unexplainable pain in their lower back or the pain does not simply go away, then they need to see a GP. They need to get answers,” she said.
For more information on the “Return to Action” campaign, please refer to Irish arthritis