Join us in celebrating World Arthritis Day this year to help raise awareness of the impact of RMD's. The theme of this year's World Arthritis Day is 'Living with an RMD at all stages of life'. It can be challenging living with a chronic condition such as arthritis but our five inspirational individuals who live with arthritis and who champion and advocate for self-management have fought back against this chronic condition and reclaimed their lives.

By sharing their stories, Arthritis Ireland aims to increase awareness of not only the signs and symptoms of arthritis and what it is like to live with the condition, but also the range of supports and services available to enable those living with arthritis to improve their quality of life. 

Read our five inspirational advocates stories here: 

Shauna O'Connor

Shauna was diagnosed with rheumatoid arthritis at the age of 6 after developing severe pain in her right wrist that wouldn’t go away. Since then, Shauna has developed arthritis in a number of joints including her other wrist, fingers, shoulder, knee and ankle and eventually lost movement in her right wrist. As a child, Shauna struggled to manage and even understand what was happening as she wasn’t involved in discussions about her condition and it became very overwhelming and isolating. Shauna wasn’t just dealing with pain, she had to cope with fatigue, nausea, stiffness, limitations, multiple hospital visits and school absences.

At age 15 Shauna was put in the care of a new rheumatologist who diagnosed her with juvenile idiopathic arthritis. The rheumatologist made sure that not only Shauna’s physiotherapy and medication needs were met, but that her social needs were looked after and that she received various accommodations. Shauna recently entered and won the EULAR Edgar Stene Essay Prize where she detailed the difficulties she encountered when communicating with medical professionals as a child. ‘What I find most helpful for my arthritis, is making accommodations where I can. I make sure I am supported in my home life and all other aspects of my life. This ranges from special equipment in work, to assistance with long queues in the airport. I’m still learning where I can seek support, but when I learn of something new that I need or can avail of I ask immediately. It’s not worth the added pain to not ask’.

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                Robin Healy

Robin Healy lives with ankylosing spondylitis (AS), an inflammatory disease that primarily causes pain, inflammation, and stiffness in and around the joints. His symptoms began when he was 19; starting in his left hip (sacroiliac joint), with painful inflammation whenever he extended his leg. In the following months, pain and inflammation had spread to his knees, heels, hip, neck and spine. In just under six months Robin went from being highly active to barely mobile. Robin was fortunate enough to be diagnosed in just over six months as a diagnosis can take up to 8 years. Once he began to take weekly injections inhibiting the inflammatory response, most of his symptoms, apart from tolerable lower back stiffness disappeared. Robin’s father and two older brothers were also diagnosed with AS. It was much easier for them to get a diagnosis and start the same treatment because of his experience.

 Apart from his weekly medication, the most important thing for Robin to manage his condition is to continue to remain physically active. Robin says ‘Whether it’s running, swimming, cycling or going to the gym; the more I engage with exercise the less stiffness and fatigue I experience. Other activities like yoga and floatation therapy also really help with managing my symptoms. I'm now 31 years old and my AS has never been better - I am more active now than when I was a teenager and my flare-ups are rare and very mild’.

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                                                          Mary Hughes

Mary began to experience joint pain in her early forties. She initially dismissed it as wear and tear from hill climbing, physical work and child rearing. However, when her fingers remained sore and swollen, she went to see a rheumatologist and was diagnosed with osteoarthritis. Because Mary had a physical job, she had to move to a more sedentary role but recognised the importance of moving regularly. Mary continues to manage her arthritis through a range of actions such as getting a good night’s sleep, pacing herself and exercising regularly. She underwent a knee replacement during the Covid pandemic, allocating her time and energy to rebuilding her confidence and strength. Mary made use of the many tips and tools that she learned from the Living Well with Arthritis programme when she was rehabilitating from surgery.

When Mary is not delivering the Living Well with Arthritis programme to help others with this condition in her community, she spends time with her local mountain walking club and cycling. Mary says ‘I am delighted to have two trekking poles which give me extra support and relieves some of the weight on my knees. I might not be scaling my former dizzy heights or rock-climbing, but I enjoy the great outdoors. We can help ourselves by understanding and managing our health conditions’. While her condition brings many ups and downs, Mary feels that she is lucky to be able to draw on the self-management tools that she learned many years ago when she first engaged with the Living Well with Arthritis programme that is run by Arthritis Ireland.

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Tim O'Sullivan

Tim’s journey with arthritis began when he experienced stiffness and soreness in his finger joints in the morning. This gradually spread to his ankles and knees, and he was diagnosed with rheumatoid arthritis in 2011. When Tim began to take medication, it took some time for him to find a regime that would work for him, and he had to take early retirement as his mobility had deteriorated. In 2016 he signed up for the Living Well with Arthritis programme which had a transformational impact on his life. The programme introduced him to action planning, healthy eating, time management, exercise and the tools to maximise consultations with his healthcare team.  Prior to the programme, Tim had worried that exercise would make his condition worse, but it had the opposite impact.

Tim subsequently went on to train as a Living Well Course leader. He now delivers the Living Well with Arthritis programme to support others in his community and it has afforded him with opportunity to give something back to other who are struggling with a diagnosis. Tim subsequently became involved with the Cork Branch of Arthritis Ireland, and he is currently the chairperson of the board of Arthritis Ireland. Tim advises anyone with any form of arthritis or related conditions such as fibromyalgia or lupus to go to the Arthritis Ireland website where they will find information and resources. ‘There is a life with arthritis. While I may not be able to do many of the things I used to, I am able to lead a full and active life’, says Tim.

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                                                          Siobhán Donohoe

Siobhán is a busy mum of 46 years old with two teenage children and works as a newspaper columnist and multimedia presenter. Siobhán was diagnosed at the age of 38 with psoriatic arthritis, a condition that she thought was an older person's disease and affects both the joints and skin. Shortly after her diagnosis and receiving medical treatment, Siobhán spent two weeks in rehab in Our Lady’s Hospice at Harold's Cross where they taught her about the power of movement and exercise. She worked out in hydrotherapy pools and met others, just like herself and didn't feel alone anymore. It completely changed her life and to this day Siobhán credits exercise, diet, and ground-breaking medication for giving her back a great quality of life. 

Siobhán believes that every movement matters and within two years of being diagnosed, she was lifting weights in the gym and trains in resistance (yoga & pilates) and weight training five times a week. She is also a member of Kilkenny Active, a club that has been so supportive and encouraging on her journey.

While it was a huge change of lifestyle when she was diagnosed with arthritis, Siobhán feels that for her, it was a change for the better. Life is good but there are flare ups to endure and she is constantly battling with the skin condition psoriasis, even though her arthritis is under control. Siobhán says ‘When I was first diagnosed, my joints were so sore and swollen that my husband had to cut my food up for me, driving wasn't any option, my skin was cracked and inflamed with psoriasis and the fatigue was unbearable. There is no magic cure for this life-long chronic disease, but you can't curl up into a ball and let it beat you’.

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World Arthritis Day 2023 is kindly supported by AbbVie and Pfizer.

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