Danny McFarlane
Danny's Hever Castle Triathlon, followed by the Royal Parks half marathon April 11th 2021 and finally the Mallorca 70.3 Ironman 9th May 2021
Fundraising for National Axial Spondyloarthritis Society
Story
I’m raising money for the National Axial Spondyloarthritis Society (NASS) for a variety of reasons.
Firstly, I have suffered from the condition since I was in my mid-teens, though thankfully I have had relatively mild symptoms compared to most people with this condition. Secondly, my kids may well inherit this from me since it’s genetic. Thirdly, I am the Treasurer for the charity therefore the financial well-being of the charity is kinda within my remit !
Most importantly however, AS (as it is commonly referred to)is, for most sufferers a painful, progressive form of inflammatory arthritis and there are a quarter of a million people with AS, which makes it more prevalent than multiple sclerosis and Parkinson’s combined!
The symptoms of AS can be difficult to diagnose and on average, there is a delay of eight and a half years between the onset of AS symptoms and diagnosis in the UK, and this is one of the longest in Europe, and that is something that needs to be remedied. For me, my first symptoms were apparent at 14 and I wasnt diagnosed until I was 21 so pretty much bang on the average.
Obviously, during that delay of eight and a half years, the condition can deteriorate considerably. For me, I ended up with 2 fused vertebrae and a "crumbled" (medical term apparently!) sacroiliac- and as I said, I got away lightly. One does not need to be an expert to understand the clinical, economic and human burden of delayed diagnosis. Therefore reducing the eight-and-a-half-year average delay in diagnosis will lead to better outcomes for those living with the condition and this is one of the main campaigns NASS is focusing on currently.
AS can develop at any time but usually begins from the teenage years or early adulthood onwards and there is no cure. No one should have to wait eight and a half years to find out what is wrong with them. I hope that we can begin to put that right.
As well as causing swelling between the vertebrae, which are the disks that make up the spine, AS can affect the chest, the pelvis and other joints, ligaments and tendons and when left untreated, the condition can lead to irreversible spinal fusion, causing severe disability. Other areas such as the eyes and bowel can also sometimes be involved.
AS has a significant impact on a patient's life. Additional symptoms can include fatigue, sleep problems, depression, and sexual dysfunction, can profoundly impact health-related quality of life and limit work, leisure, and daily activities.
The spinal fusion so common with AS can reduce range of motion, increase risk of fracture, cause the spine to curve forward, make the rib cage stiff and restrict the ability of the lungs to do their job.
In short, it's nasty and NASS is the only charity in the UK dedicated to transforming AS care in the UK by building awareness, improving care and empowering the community so please do support us.
Thank you.