Spondyloarthritis (SpA) affects millions of people around the world and can have devastating impacts on quality of life. It is more common than multiple sclerosis and ALS (amyotrophic lateral sclerosis) combined and often strikes people in the prime of life. Yet most people have never heard of it.
A shocking 80 per cent of those diagnosed know nothing of SpA.
But the lack of awareness – in the public and among health care practitioners – carries a deep cost. It typically takes seven to 10 years for a proper SpA diagnosis. And that delay can lead to unnecessary pain, mental anguish, physical degeneration, disability, derailment of careers and marital breakups.
World Axial Spondyloarthritis Day on May 6 aims to help ease this suffering by raising the profile of this disease and increasing awareness of its physical, mental, social and emotional toll on those who have it. This global awareness day is a chance to shine a light on SpA.
The theme of World AS Day is Moving for axSpA. We know that movement is as important as medication for those living with this condition. Exercise leads to improved physical and mental well-being for all of us and for those with SpA that’s even more so.
Our board chair Dr. Élie Karam says his daily routine of yoga and tai chi is not optional. Exercise, good nutrition, maintaining a healthy weight, and a positive mindset are the key ingredients to managing his symptoms.
Inflammatory back pain, unlike back pain that comes from a mechanical source, actually gets worse with rest. So for those with SpA, movement helps reduce stiffness and pain, improves sleep and increases energy levels.
And this doesn’t necessarily mean running a marathon or doing a spinning class. It means movement according to your ability. Even a short walk or gentle stretching each day can lead to an improvement in symptoms.
The key is to fit some movement into every day.
There are many other ways to boost your well-being when it comes to living with SpA. So on May 6, connect with others affected by the disease by joining a virtual or in-person event (a list of global events is here), accessing resources offered by the Canadian Spondyloarthritis Association (CSA), or engaging with the SpA community using #WorldASDay2023. Using that hashtag raises awareness and you can amplify that further by sharing your own story. These are all great ways to use this global awareness day a chance to shine a light on SpA.
CSA is the only patient-led, charitable organization focused solely on Canadians living with spondyloarthritis. We have a bold and strategic vision for improving lives through research, education, advocacy, cross-sectoral partnerships, and the provision of credible, data-informed, evidence-based and relevant resources.
When CSA asked patients from across Canada to share their experiences with pain, we discovered:
- 89 per cent of respondents said that spondyloarthritis impacts their sleep;
- 56 per cent of respondents said they lived with anxiety and depression;
- 74 per cent said they avoid social events;
- 37 per cent of respondents said that they do not feel they have a good support network;
- Only 41 per cent of respondents felt their employer would accommodate their illness, and many are afraid to tell their employer about their condition.
These results are just a glimpse into the deep and broad harm caused by SpA. They reinforce our resolve at CSA to demand faster paths to diagnosis and treatment, and fair access to life-changing services and medications for all, not only those with coverage or those living in certain areas of our country.
We are committed to each and every one of the half million Canadians living with this disease and all those yet to come.
Brenda Delodder, Executive Director
Canadian Spondyloarthritis Association
Brenda.Delodder@sparthritis.ca