In October 2020, I was diagnosed with Ankylosing Spondylitis (AS), also known as Axial Spondyloarthritis (axial SpA), which is an inflammatory arthritis, mainly impacting the spine and other joints, tendons and ligaments. My father has had the same disease since he was 13 years old. 

Once the lockdown began in March 2020 in Switzerland, I found myself with nothing to do and nowhere to go, as did many people my age. Being an avid runner, I decided this was a good time to begin training for the Lausanne 2020 marathon. After about 2 months of serious marathon training, I developed pain in the upper part of my right leg and lower back. The pain persisted for several weeks, so I decided to go to the doctor who prescribed me physiotherapy and anti inflammatory medication. There was no improvement, so I was tested for the gene “HLA-B27” (a marker for AS susceptibility), which came back positive and was then referred on to a rheumatologist in October. 

The rheumatologist immediately arranged for an MRI scan of my lower back, because inflammation from this disease usually begins in the sacroiliac joints. The results of my MRI indicated that I had AS. I began treatment straight away with 2 injections of a biological medicine every 2 weeks for 6 weeks, and now I only have to give myself 1 injection every 2 weeks. 

I am very grateful to have had a thorough diagnosis of AS, as well as access to the best possible treatment. Unfortunately, there are many people who are diagnosed too late. The actual average delay in diagnosis is 8.5 years, by which time there may have been irreversible damage in the spine. Moreover, many people are unable to afford the necessary treatment to control the inflammation and pain.

I am also very pleased and grateful that since December 2020, I have experienced little to no pain. I may have to take the injections for the rest of my life, but accept this if I can live pain free.

After several months without running, I have decided to take it up again and plan to run 750 kms this year, starting February 4th, and finishing on February 4th 2022. I will be doing this to raise money for NASS, the only charity in the UK supporting patients with AS. All the money I hope to raise will help people with their AS diagnoses and help them obtain expert advice and support. I will track my kms using the Strava App and will post my progress on this platform. Your support is especially important at this time, since NHS hospital based rheumatology has been dramatically impacted by COVID 19. Routine appointments, physiotherapy, hydrotherapy and other important NHS services are not as available as they were.

Your donation and support for this charity would mean a lot to me, as someone whose family has been impacted by this disease as well as to NASS, in order to encourage their continued efforts and support of those suffering from AS. I would also aim to make more people aware of this rare disease. 

If you would like to know more about NASS and what they do or for further information about AS, its symptoms, diagnosis and treatment, please visit: https://nass.co.uk. Also, do not hesitate to contact me should you have any questions. My number is: +41 79 886 42 85.

Thank you very much for your support, I truly appreciate it.

Take care,

Nicole