In recognition of the Canadians affected by axial spondyloarthritis (AxSpA), we’re sharing Dr. Élie Karam’s story.
“It’s just a sprain. It’ll go away. It’s nothing.”
I thought I simply had a back sprain from playing squash. I dismissed the painful inflammation that began to spread from my back to my neck and shoulders. I became frustrated and annoyed at the limitations these flares placed on me. I couldn’t perform at my best. Sometimes I couldn’t be intimate with my wife. Sometimes I couldn’t do surgery.
The ironic part was that I was an orthopaedic surgery resident surrounded by experts in the musculoskeletal field. And yet, for two years, we all missed the diagnosis. I have non-radiographic axial spondyloarthritis (nr-AxSpA), a form of axial spondyloarthritis (AxSpA). Ankylosing spondylitis (AS) is another form of AxSpA, a chronic, progressive disease that causes joint inflammation, leading to back pain and stiffness. In its most severe form, fusion of the spine can occur. I began to think, “If I missed my own diagnosis for years, it must be unbearable for others battling this invisible disease for close to a decade before receiving a diagnosis.”
People living with AxSpA spend an average of seven to nine years from symptom onset to diagnosis. We must do better!
For those living with AxSpA, my advice is to journal everything. Journal your pain. Journal your symptoms. Then, when you meet with your rheumatologist and they ask how many days in the last month you were incapacitated by pain, you can provide an objective answer.
Have compassion for yourself, but also empower yourself with knowledge and advocate for yourself. An earlier diagnosis and treatment of AxSpA can help prevent fusion of the spine.
It’s possible to live very well with this disease. A good first step is to go to sparthritis.ca, where you’ll find a wealth of information by top experts plus great tools and resources. Others are here to help. You are not alone.
The information presented here is intended for educational purposes only and is not a substitute for professional medical advice. Always consult your healthcare provider for personalized guidance regarding your health.
Interested in joining others who know what you’re going though? Join a CSA support group today!