Ben started with episodes of back, hip, neck and knee pain aged 8 just after he’d had scarlet fever. Fortunately for him, the GP was a little more switched on by then as his Mum has been diagnosed some 8 years before. At the time he said it seemed likely that Ben was developing AS. For his Mum it was like watching herself go through those early years all over again. The big difference was, they now had the knowledge of AS and knowledge is power.
His flares became more frequent in his teens and Ben himself asked the GP if he could have a blood test and lower back x-ray when he was 14. The results muddied the waters for a while. Ben wasn’t HLA B27 positive but even at 14, his x-Ray showed that he had unhappy sacroiliac joints. He didn’t actually see a rheumatologist for another 3 years after he’d had a really bad bout of glandular fever and flares became much more severe. The diagnosis of ‘mild AS’, Axial SpA as it is now, was made.
The steroid shot he was given that day was to bring another massive life long change. A few weeks after that shot, he became a type 1 diabetic. In the high dependency unit at the hospital, they said that the steroid shot on top of the recent bad infection was just too much for his pancreas. In typical Ben style, from day 1 he didn’t let that hold him back and has always coped with it in his usual stubborn and determined way.
Ben had a huge series of blows in a short space of time but coped brilliantly with both AS and diabetes and longed to become an entomologist. This year, he has a six month conservation internship in the Peruvian Amazon jungle (as you can see in the video!) and is absolutely loving it, telling AS ‘Not Today!’ on a daily basis.
You can follow Ben’s journey in his vlog The Diabetic Conservationist.