Sofía is taking on the Brighton Marathon 2025 for NASS!

“Now that I had my diagnosis, I wanted to prove to myself that I could do just as much as before, if not more.”

After first experiencing debilitating pain in their sacroiliac joint during their undergraduate degree at university, Sofía was finally diagnosed with axial SpA at 21. Now, Sofía is running the Brighton Marathon on 6 April 2025 to raise funds to support other people living with axial SpA.

Here is their story.

 I was diagnosed with axial SpA in 2022 at 21 years old after experiencing two and a half years of debilitating symptoms throughout my undergraduate degree.

I could barely walk due to an acute pain in my sacroiliac joint, which over time switched to my other leg. The pain would keep me up at night, and my doctors insisted on putting it down to a running injury. I knew that this was something more.

I was finally led to ER and waited for 10 hours whilst experiencing an excruciating flare-up. There was a mess-up with my tests and I went back to Spain, my home country, and finally received my diagnosis.

It was a bittersweet moment to finally receive answers. Axial SpA sounded like a terrifying condition to someone who had never heard of it and realising that this diagnosis was forever was overwhelming. However, I finally had answers and therefore the chance at finding ways to manage a condition that had been ruling my life. During my years of intense chronic pain, not knowing its cause or when it might end, my mind truly went to a dark place.

I started my treatment with NSAIDs and saying that these medications were life-changing would be an understatement. Before medication, my pain had an effect on my everyday life, stopping me from doing activities with friends or even sleeping. After starting NSAIDs, it felt like my life started again; I was able to keep doing all the things that I loved, and I was truly grateful to have a body that I could rely on again.

Both before and after the start of my chronic pain, running has always been when I felt my freest. The feeling of sprinting outside, with the sensation of the wind blowing on my face, is my happy place. Following my diagnosis, my rheumatologist said that it would be best if I stopped running. Despite this, I insisted that I wanted to keep going, as it meant so much to me. I have kept running. I haven’t let my condition stop me, although I watch my symptoms closely to make sure it does not induce any flare ups.

Now that I had my diagnosis, I wanted to prove to myself that I could do just as much as before, if not more. The idea of running a marathon was stuck in my mind and I ran my first marathon last year in Paris. The feeling of completing this distance was exhilarating, and I knew that I needed to keep running. In continuing the pursuit of this dream, this year, I will be running the Brighton Marathon while fundraising for NASS. I am hoping to complete it under four hours this time!

Training is not always easy due to occasional flare ups. The pain can be terrible, especially in the evenings. My back starts spasming and I can barely stand up. During those days, it is important to be kind to yourself, and somehow balance staying active and resting. My morning runs have been a great way to keep active. When I wake up with a stiff back, pushing through a painful run will often make me feel better. Thankfully, I

have a flexible work schedule as a PhD student in Mathematics, which allows me to rest more during flare ups.

I sometimes worry that I will get a flare up the day of the race and that I won’t be able to run. But I must remember that there is nothing that I can do about that, and a lot of the joy of this journey has come from the many months of training and all the funds raised for such an important cause, rather than it being all about the final race. Throughout the whole process, family and friends have been incredibly supportive, and I have also fundraised through my choir and at my university by selling baked goods.

I am excited to put another marathon under my belt! My condition has given me a lot of perspective and, in spite of the painful days, being able to take on such a challenge has been incredibly joyful.