A Kilkenny woman is one of the faces of a national awareness campaign about psoriatic arthritis (PsA) launched by Arthritis Ireland this week.
The patient organisation and research charity is looking to inform people about the autoimmune condition which, it is estimated, affects 9,000 people in Ireland. It is also undertaking a major survey on the impact of the disease on people’s lives.
Psoriatic arthritis is a form of inflammatory arthritis that can cause pain, swelling and sometimes damage to any joint in the body. It is not known exactly what causes the disease, although research has shown that genetic and environmental factors can play a role.
Siobhán Donohoe (43) first began to experience symptoms after the birth of her children, Ted (12) and Hannah (10).
Feeling weak, fatigue and anxiety, amongst other symptoms, the busy PR consultant initially put these experiences down to juggling motherhood with the stress of a busy work schedule.
However, the “tell-tale sign” that something more was at play, she said, was when she couldn’t lift her suitcase from the carpark to the office. Eventually, she was unable to use cutlery to eat. After a rash appeared on her hand, her entire body broke out in blisters.
Dr Laura Durcan, consultant rheumatologist at Beaumont Hospital, said that an early diagnosis is key to ensuring that “patients have a normal life, like having a job, a family, going out and playing sport, dancing and doing normal stuff”. In order to achieve this, it is vital that patients are seen sufficiently early, “when they have no damage”.
Psoriatic arthritis can cause permanent joint damage quickly when not treated. Once damage occurs, it is not reversible and can cause significant pain.
When she was diagnosed, Siobhán Donohoe wondered, “What have I done to get an old person’s disease?”
“When you’re sick,” she said, “people don’t see that. You look grand from the outside, but you’re constantly battling pain and you don’t know when it’s going to flare up, how it’s going to happen or where it’s going to take you.
“It hits you with a bang. You have no energy, you’re in pain at night time, while you’re asleep the pain wakes you up, you can’t turn from one hip to another in the bed, you get up and you’re aching and stiff all morning,” she explained.
A year or two after being diagnosed with this invisible disease and having started a treatment regime, Siobhán says that she wanted her life back.
She now operates via the principle of “pace management”, where everything is planned out and paced to suit her needs. “I don’t say yes to everything anymore,” she said.
Siobhan changed her lifestyle and her attitude to her health. “I may have arthritis but it doesn’t have me. Plus I would do anything to get back into my beloved high heels! I wanted to take back my body and regain energy for life again, so I started on the road of self-caring and healing. My life turned around, with the help of exercise, diet and the right medications. I treasure my energy and the good days, but remain mindful that I live with a chronic disease.” A firm believer in the value of yoga, physical exercise and healthy eating, she is brand ambassador and advocate for women’s health for the Kilkenny Active gym at Hotel Kilkenny
Although Siobhán got her first flare-up in two years during the Covid-19 pandemic, she said that when she was diagnosed, she could not have imagined her life as it is now.
“Take all the support you can,” she advised. “I need to have the life jacket on before I can take care of anyone. Self-care is so important. If I’m not well and down, the whole house is not well. It’s sometimes selfish, but Mammy needs to be right first.”
Further resources and information about psoriatic arthritis are available on the Arthritis Ireland website, www.arthritisireland.ie.
Arthritis Ireland also has a branch in Kilkenny, which provides valuable local support and information to people in the county with psoriatic arthritis – or any form of the condition. Information about the Kilkenny branch can be obtained on their Facebook page.
The Living with Psoriatic Arthritis campaign is supported by Novartis.
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