Alex’s story

Alex's journey to diagnosis was long and painful but he finally found a diagnosis when his osteopath suggested a referral to rheumatology.

We met Alex at his office, the Google headquarters in King’s Cross, and admired the view across London. As a keen runner, father to 2 children and Partnerships Lead for Android, most of his colleagues would never guess he is living with Ankylosing Spondylitis. However, his journey to diagnosis was a long and painful one.

Alex first started to show symptoms of AS when he was 21.

“I was just finishing university and didn’t know what an earth it was. I’d be getting up from bed and would get very sharp pain in my leg.

I took anti-inflammatories, a lot of ibuprofen and they helped. My thought at the time was that it must be a snowboarding injury.”

After university he moved to London and started work. His symptoms worsened in this period and he found himself sometimes hobbling to work in pain.

“I went to a couple of London hospitals, and had x-rays and scans from the top of my head to the tip of my toe.

I still have those scans. What came back was some inflammation but nothing big enough or bad enough for them to mention AS.

I have looked back at my notes, which did mention AS back then. But I was discharged and put on physiotherapy. That was 15 years ago.”

He continued to work through years of little sleep and back pain throughout the day.

“I kept this to myself, it wasn’t something I felt I could tell my friends because I didn’t know what it was because as far as I knew it was a bad back.”

“I tried to not let it change anything in my day to day life. Running is my way of clearing my mind so I used to go for runs in agony”

Around 2012 Alex had a beneficial massage whilst on holiday, and with a recommendation through the Institute of Osteopathy he found an osteopath in London who he began to visit regularly.

However, in 2015 the flares became more frequent and more intense.

“Then it was upper back and lower back, which meant I couldn’t sleep because it was painful at night. I was getting about 4 hours sleep for a few years

Then my son was born in March 2015, which coincided with it just going off the scale, uncontrollable. This was when I was definitely sleeping 4 hours a night and in agonizing pain the 20 hours that I was awake.”

After visiting him for a few years and seeing little improvement, his osteopath suspected ankylosing spondylitis.

“He kept thinking it might be AS. And when it wasn’t getting any better he said I think you should go to the hospital to get diagnosed.”

“At that point I didn’t know what AS was, he was the first person to tell me about it. Although my scan back in 2002 it mentioned it, I didn’t have a clue what it was.”

Once he was referred to Guy’s at St Thomas hospital, the path to diagnosis was quick.

“They did a scan in 2015 and I had the tell-tale sacroiliac joint inflammation and was diagnosed despite testing negative for the HLA-B27 gene.”

“I was very quickly put on Humira, and for me it was a next day recovery. I’m now symptom free. I was taking Humira once a week but I am now tapering it and take it once every 8 weeks.”

Now that Alex is living mostly symptom free he wants to help others living with the condition. He works closely with the team at Guy’s at St. Thomas Hospital and attends focus groups there. He also is a keen supporter of NASS, fundraising for us by running the Royal Parks Half Marathon.

 “When I got diagnosed I was put in touch with NASS. They have been nothing but supportive. I’ve been on social media channels and been on the website for information.

“My advice to anyone with AS would be to talk to people. Connecting with people is an important way to realise you are not alone.”

Visiting a chiropractor or osteopath is a common pathway to diagnosis for many AS patients, in fact a survey conducted by NASS in 2017, 60% of people who visited an osteopath did so prior to diagnosis, and likewise 68% of people who had visited a chiropractor did so before diagnosis.

That is why we are working with the Institute of Osteopathy and the Royal College of Chiropractors through our NASS Allies programme, running educational seminars and developing a GP referral template, endorsed by the Royal College of GPs.

Read more about NASS Allies