“This is my first year helping to raise funds for NASS and I am delighted with the support of my friends and family during such a difficult time. I’m so lucky to be so supported.”
After 30 years of managing his condition alone, Kevin got diagnosed with axial SpA earlier this year. Now he is on some medication, Kevin joined #TeamNASSPAWs with his dog, Arthur, for Walk Your AS Off to raise awareness of axial SpA and funds for NASS.
Here’s his story.
My experience of what would prove to be axial SpA first started in the early to mid-90’s. I was getting a vague grumbling back pain when I rested that spread to my sides – that was diagnosed as being Inflammatory Bowel Syndrome (IBS) at the time.
I was finally diagnosed with axial SpA this year at 51 years old, having taken 30 years to receive a diagnosis. My brother gained a diagnosis years ago, but I had to wait much longer.
I have had to self-manage this for years, making extensive use of osteopathy and physiotherapy over the years. These things only ever helped relieve symptoms at the time, but the problem always persisted and would flair up from time to time.
I went part time in my work as a software engineer years ago. It was the only way I could manage the pain and exhaustion and still work. 4 years ago, I also became a remote worker to make working more viable. The illness has had a significant impact on my career and income. It’s also hugely impacted my mental health, eventually leading to severe depression and emergence of agoraphobia.
I finally got referred to a rheumatologist this year when I was seeing a physio for problems with my clavicle related to osteoarthritis. I mentioned the flare of lower and middle back plus rib pain and exhaustion I was going through again. After a brief examination she referred me to rheumatology. This finally led to me getting diagnosed with axial Spa.
I have stayed active all the way through, walking when I can (with my dog) and also cycling when possible. This has gradually become harder, but I try to keep it going.
Keeping active has been vital in self-managing this condition through all the years without diagnosis. My brother has struggled due to other injuries and it’s noticeable how this impacted his mobility. Although I was not diagnosed for 30 years, my brother’s experiences motivated me to stay active whilst I could, helping to force me outdoors and to challenge my agoraphobia directly.
I am now finally getting medication (etoricoxib, at the moment). It is helping me to get some sleep at night and have less nights waking up in pain. In turn, this is helping me to join in with Walk Your AS Off.
My sister pointed me to the NASS site and the brilliant information, support and guidance inspired me to join and help raise funds. Anything we can do to reduce these diagnosis times for people with axial SpA in the future has to be a positive.
This is my first year helping to raise funds for NASS and I am delighted with the support of my friends and family during such a difficult time. I’m so lucky to be so supported.