Mufseen
Faces of Axial SpA
Mufseen’s story is one of self-advocacy and the life-changing impact of timely diagnosis and treatment.
His journey began with a nagging pain in his right hip, a pain that gradually escalated, making everyday tasks increasingly difficult. “Right at the beginning, I just had bad back pain, mostly hip pain in my right hip,” Mufseen recalls. “Really struggling, basically I had to take codeine to get out of bed.”
At just 19, he found himself grappling with simple activities like tying his shoelaces. “It’s such a regular thing,” he explains, “but when I was in pain, even something as simple as tying my shoelaces became a struggle.” This wasn’t the life he expected as a young man.
“I was like, oh I’m not old. So why am I getting this?
I’m not lazy, I don’t eat unhealthily, I exercise and still want to go for long walks. It was kind of scary at the same time.”
Mufseen initially tried to manage the pain with over-the-counter painkillers. “Before I was diagnosed, I’d just take a paracetamol and carry on”. The uncertainty of his condition added to the anxiety. “I have never dealt with stuff like that before. so, like having to do that at a young age never really having any previous big medical issues to deal with on my own.”
The process of getting a diagnosis wasn’t straight forward. “I think they did x-rays and didn’t see anything. They only really noticed what it could be on an MRI scan. I guess because MRI scan shows inflammation levels as well. But yeah, I don’t think they really thought it was anything and I don’t think they really knew what it could be,” he explains.
A breakthrough came when his sister, through her work, was able to add him to her private healthcare, allowing for further testing. “I got a diagnosis because my sister had private health care… that’s how we found the genetic marker for ankylosing spondylitis,” he shares.
“Getting the diagnosis is a relief”
The diagnosis of axial spondyloarthritis (axial SpA) was a turning point. “Getting the diagnosis is a relief,” Mufseen says. “I don’t want to go back to the days where I was at uni and struggling to get out of bed and finding it difficult to walk.”
The right treatment, including biologic medication, has transformed his life. “The medication reduces the level of inflammation in my body, so it’s not attacking my joints,” he explains. “I can go about my day pain-free now.”
Mufseen emphasises the importance of lifestyle changes. “It’s all stuff we should be doing anyway, but now I’m more aware of it, and that’s only a good thing,” he says, highlighting the role of exercise, diet, and mindfulness.
“At first, I had a lot of negative self-talk, but you either let a chronic illness limit you or propel you,” he reflects. “Now, I don’t feel bad about myself—it’s made me more aware of my body, and that can only be a good thing.”
He also stresses the importance of listening to your body and advocating for yourself. “If you’re dealing with chronic pain, don’t suffer in silence. Go see a doctor, get checked, and push for a diagnosis,” he advises.
Mufseen has found ways to integrate his condition into his life. “My company’s quite good. They give us the right desks and stand-up desks if you need them, all that kind of stuff,” he says. “I don’t really have challenges there but, when it comes to getting the time off work to make appointments and blood tests it can be difficult.”
“I like the fact that I don’t hide it from people”
He’s also found a sense of community by being open about his diagnosis. “I like the fact that I don’t hide it from people, and I don’t feel shame. I feel like I’ve like raised awareness about it. A lot of people don’t really know about AS so it can be quite an interesting conversation,” he shares.
His advice to people with low back pain is: “If you have symptoms then you should definitely float the idea of axial SpA with your doctor. Try to get a diagnosis as soon as possible. Take your health seriously, because AS it’s progressive.”
Mufseen’s story is a powerful reminder that with early diagnosis, effective treatment, and a proactive approach to health, it’s possible to live a full and active life, even with a chronic condition.
