“Thanks to the support I have received from NASS, I am fundraising for them as I want to give others the chance to get diagnosed earlier that the current average time of 8.5 years. It shouldn’t take that long!”
Chris shares his journey to diagnosis, the support he received from the NASS to help him come to terms with living with axial SpA and why he is running the Great Western Run to raise money to help others get an earlier diagnosis.
I started to experience symptoms when I turned 32 but I just dismissed it as a bad night’s sleep or I’d overdone it at my last kettlebell session. Gradually over time, it was apparent that something wasn’t quite right. I tried everything: changing my mattresses and desk chairs, doing more stretching, just to try and alleviate some of the pain. It was worse in the mornings.
I struggled to keep up with my physical activities like kettlebell classes, golfing and football. I think the final straw was during a trip to Switzerland which I had planned to do lots of hiking. I didn’t know if it was the heat that came with the long walks but every time we came back to the chalet, I had to lie down in the baby pose, just hoping to keep my back flat and stop the aching!
Back in the UK, I booked some chiropractic treatment but it only offered temporary relief. My chiropractor suggested getting a blood test to see if it would provide anymore insight into my symptoms. After she provided a referral letter to my GP, I was quite shocked as my blood test came back that I tested positive for HLA-B27 gene. My GP then referred me to a Rheumatologist for more tests and after a scan confirmed the inflammation of my lower spine and sacroiliac joints, I was diagnosed with axial SpA. I didn’t expect to find out that an inflammatory arthritis disease was the cause of the sleepless nights, the lack of energy, and the constant discomfort I was experiencing. I am young, I didn’t expect to have any real health issues until I was at least 50! (or so I had hoped).
I was somewhat relieved to know that it wasn’t due to anything wrong I was doing. It was just time to take a step back and get it under control. I started taking medication which helped to manage my symptoms although I still get flare-ups every now and again.
I was really grateful to get guidance from my chiropractor and my GP for the referral to Rheumatology and although I initially faced resistance, I learnt to speak up more and continue to push for answers.
Then came the great information given on the condition, the treatment options, and the community and resources I could tap into to help support me and connect me with others with this life-changing illness. I was made aware of NASS and the work they were doing, the various resources online that had helped me greatly become more aware of where I could go, and what I could do.
Thanks to the support I have received from NASS, I am fundraising for them as I want to give others the chance to get diagnosed earlier that the current average time of 8.5 years. It shouldn’t take that long! I was very fortunate to get a diagnosis within 8 months, but I know this is not the case for most people which is why I’m passionate about raising money towards this cause.”