Sarah waited for 33 years to be diagnosed with axial SpA. Since her diagnosis, she has started taking biologics, reducing her symptoms. Now, not only has she has signed up to Stretch-tember, but she is also taking on a virtual Kilimanjaro climbing challenge too – all to raise vital funds for NASS and awareness of axial SpA.Read Sarah's story
As a sixteen-year-old, Laura was crushed when she was told by professionals that her increasingly painful symptoms were most likely to be psychological. After three years of pain, doubt and fear she finally received her diagnosis. Now on a new treatment plan, Laura has decided to undertake the 2024 Plymouth Half Marathon, to raise crucial funds for NASS and help raise awareness of axial SpA.
Here is her story:
My symptoms properly started back in 2018 with pain in my lower back which radiated down my legs. The GP told me that it was due to stress; alongside this I was experiencing recurring urinary tract infections, I had just started my A-Levels and my sister had undergone surgery for scoliosis, so it was a tough time for us as a family.
Hoping my symptoms would get better I carried on. Unfortunately, the pain continued to get worse, I became increasingly tired and struggled to walk.
“I was heartbroken and started doubting myself questioning if it was all in my head.”
I was not referred to a rheumatologist right away as it was thought the issue could be neurological. This led to multiple MRI scans which showed nothing, and I was once again told my pain was likely to be psychological. I was heartbroken and started doubting myself questioning if it was all in my head.
When I finally received a referral to a rheumatologist, they immediately said ‘this could be axial spondyloarthritis.’ It was the first time I had ever heard of the condition. After three years of living with pain and worry, I was finally diagnosed with axial SpA in May 2021, just two days after my 19th birthday.
I was finally able to start on biologic injections. Unfortunately, the first two I tried had no effect, and with the trial periods and screening tests, suddenly two years had passed, and I was still not managing my symptoms. However, I am happy to say that I have recently started on a new treatment plan and things seem to be working!
“I love seeing how much my body is capable of.”
I have always been active; I come from an active family and have spent my whole life outside walking on Dartmoor or in the Lake District. When I first got ill my activity levels decreased massively and it has only been recently, I have been able to do more exercise again. I enjoy swimming, attend gymnastics, and dance classes and I have also recently joined a CrossFit gym and love seeing how much my body is capable of.
My rheumatologist has always told me to keep moving as much as possible and I am so grateful my body allows me to do just that as I know this will help me massively in the long run.
“Running combines my favourite things – being outdoors and moving my body”
Two years ago, I completed a mile swim to fundraise for NASS, I am now challenging myself further and have chosen to complete the Plymouth Half Marathon next year to help raise awareness about axial spondyloarthritis and raise money for NASS. Despite my active background I am not a runner! However, running combines my favourite things – being outdoors and moving my body.
It has been scary starting something new especially in a body I do not feel I know that well, my symptoms can be unpredictable and its important I take things slowly to give myself time to adjust. Signing up for a half marathon has given me a focus and I am really enjoying my training.
Amy began experiencing pain her joints in her early 20s. When her GP on the Isle of Man mentioned it could be axial SpA, that was the first she’d heard of the condition – around 15 years after she first experienced symptoms. Now, she’s taking on Walk Your AS Off this May.Read Amy's story
“If you are like me and have never been ‘into’ exercise and you struggle with pain, can I encourage you to just take one step at a time, even if that means just hobbling down the road, keep going, it will help in the end.”Read Abi's story