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.

The post Not Today! – Ben’s message to ankylosing spondylitis appeared first on ASone.

Dealing with a gremlin called ankylosing spondylitis on a daily basis can be exhausting. Faye is a physio, but she also lives with AS and shares her experiences (as well as some very useful tips!) in her vlogs on Youtube:

I was diagnosed unexpectedly 6 years ago, when I was just 25. So unexpectedly, I couldn’t quite believe it. I’ve spent 5 years tying to find any other reason for my sudden symptoms.

Being a Physio didn’t help me initially, it hindered me. I didn’t get the right explanations and I wasn’t listened to properly, as everyone presumes being a health care professional you should know what your next steps are. There was also no talk of how this crashing diagnosis was going to affect me mentally.

It wasn’t until after the birth of my daughter (which was a life threatening situation in my case) that I accepted the diagnosis and found myself turning my mindset around in regards to AS and living with a life long disease.

I have good days…great days….horrible days….tragic days. But overall AS doesn’t define me, it doesn’t have control over me and I want to help others change their mindset so they can live a healthier happier life free of pain.

Find out more about Faye and don’t forget to visit her channel for more great vlogs!

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Touching stories presented in this documentary are definitely something that anyone living with AS can relate to. This beautiful film was made by three friends from Manchester, England after the director’s father was diagnosed with AS three years ago.

Sophie is a filmmaker from Manchester who decided to produce a documentary on ankylosing spondylitis after her dad was diagnosed with this condition. You can find out more about this film on the Beecam Productions page.

The post In My Bones – living with ankylosing spondylitis appeared first on ASone.

Dr. Andrew Keat, consultant rheumatologist, explains the role of the rheumatologist in treating ankylosing spondylitis (axial spondyloarthritis) AS, how the NICE Spondyloarthritis Guideline says AS should be managed and what to expect from the first treatment step — NSAIDs. Poppy and Paul

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Listen to consultant rheumatologist, Dr Andrew Keat, explain about biologic treatments for ankylosing spondylitis (axial spondyloarthritis) (AS). Poppy and Paul share their experiences with biologic treatments

The post Ankylosing Spondylitis (axial spondyloarthritis) AS The second treatment step appeared first on ASone.

Dr Danny Murphy explains the role of your GP in the diagnosis and management of your ankylosing spondylitis (axial spondyloarthritis) AS.

The post Ankylosing Spondylitis (axial spondyloarthritis) AS – What to expect from your GP appeared first on ASone.

The post Ankylosing Spondylitis (axial spondyloarthritis) AS Getting your diagnosis appeared first on ASone.

Listen to Poppy and Paul talk about their experiences with managing fatigue and flares.

The post Ankylosing Spondylitis (axial spondyloarthritis) AS Coping with fatigue and flares appeared first on ASone.

What is the role of surgery in ankylosing spondylitis (axial spondyloarthritis) (AS)?

The post Ankylosing Spondylitis (axial spondyloarthritis) AS Will I need surgery? appeared first on ASone.

Paul was diagnosed with ankylosing spondylitis (axial spondyloarthritis) AS nine years ago. He talks about his journey to diagnosis, the daily challenges he faces and his advice for others living with AS.

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