‘I’d been feeling stressed and had not been sleeping much,’ recalls Dasha, who was 19 at the time. ‘I thought it was conjunctivitis’
Student Dasha Karzunina assumed at first that the red, painful eye she had developed while revising for her university exams was a simple infection.
‘I’d been feeling stressed and had not been sleeping much,’ recalls Dasha, who was 19 at the time. ‘I thought it was conjunctivitis.’
Indeed, initially her GP prescribed antibiotic eye drops but, over the next few days, Dasha’s symptoms worsened.
‘I also became really sensitive to light and wasn’t able to read properly, because my vision was so blurred,’ she adds.
Dasha went to her GP again two weeks later and was sent to hospital to be seen by a consultant, who gave her some devastating news.
‘The specialist said my eye was dangerously inflamed and warned me it could damage the structure of the eye and I could go blind without treatment,’ says Dasha.
‘I had to have steroid injections into my eyeball immediately to reduce the inflammation. I was so shocked.’
Dasha, now 28, was suffering from a type of arthritis that can trigger eye problems — but it would take another eight years before she would receive the correct diagnosis.
Instead, she was told she had uveitis — inflammation of the middle layer of the eye (the uvea or uveal tract). Causes include autoimmune conditions, where the immune system attacks the body.
Although 50 per of cent of sufferers have an auto-immune condition such as inflammatory forms of arthritis, it can also be caused by bacterial and viral infections.
‘I was prone to cold sores and they thought the herpes simplex virus [which causes cold sores] may be responsible for the attack,’ says Dasha, who lives in Hackney, East London. ‘Thankfully, the steroid injections worked and, within a day, the pain and redness had gone. I thought it was a one-off.’
But, four years ago, in 2016, Dasha’s left eye become red and sore again, and she went to Moorfields Eye Hospital in London, where she was again prescribed steroid drops.
‘But this time the steroids didn’t work, and my eyes became much more painful,’ recalls Dasha. ‘I couldn’t bear daylight and even had to wear sunglasses indoors.’
When, after three months, there was still no improvement, Dasha, who is head of market research at a media company, was tested for a gene called HLA-B27. People with the gene are more predisposed to auto-immune inflammatory conditions, including uveitis and a type of arthritis called axial spondyloarthritis (axial SpA).
Axial SpA affects the middle part of the skeleton, from the skull down to the sacrum at the bottom of the spine. Around 200,000 people in the UK are affected.
Although a classic symptom is back pain, in the sacroiliac joint (at the base of the spine), other signs include the skin condition psoriasis, inflammatory bowel diseases, as well as uveitis.
Axial SpA is an umbrella term for a group of inflammatory arthritis conditions, including so-called non-radiographic axial SpA (damage to joints not visible on an X-ray) and ankylosing spondylitis (where the bones in the spine fuse together, restricting movement).
Dasha, who tested positive for the HLA-B27 gene, says: ‘The doctors asked if I’d ever had back pain and, as I hadn’t, they said having the gene probably just meant I was more prone to uveitis. They explained not everyone with the gene has axial SpA.
‘They referred me to a rheumatologist, but he said I had good flexibility, so it was unlikely I had inflammatory arthritis,’ she says.
Two years ago, though, Dasha ran a half marathon and, afterwards, woke up with pain in her left hip. Her GP thought it was a sports injury and referred her for physiotherapy. But this made no difference and, one morning, Dasha, woke up with stabbing pains in her hip that left her struggling to get out of bed.
After an MRI scan in December 2019, she was finally diagnosed with axial SpA.
Tom Randall, 39, Conservative MP for Gedling, Notts, spoke in Parliament in September about the need for faster diagnosis. He had textbook axial SpA symptoms aged 16, but it still took around four years to get a diagnosis
‘The doctor told me it would never get better and, although he said it was unlikely I’d end up in a wheelchair, he couldn’t give me any guarantees,’ says Dasha.
The delay in Dasha’s diagnosis is not unusual: most axial SpA patients wait on average eight-and-a-half years. Part of the reason is a lack of awareness of the symptoms among both patients and doctors, says Professor Karl Gaffney, a consultant rheumatologist at Norfolk and Norwich University Hospital NHS Trust.
‘Most have never heard of axial SpA, yet it’s more common than multiple sclerosis and Parkinson’s disease combined.
‘People can develop uveitis, psoriasis, or [inflammatory bowel condition] ulcerative colitis, and they may be treated for those when the underlying condition is axial SpA,’ he says.
And because axial SpA typically starts when people are in their late teens and early 20s and still active, the symptoms — chronic back pain that eases off with activity, early morning stiffness, pain and fatigue — can be dismissed as sports injuries.
‘Other hurdles include the fact that early-stage axial SpA will show up only on an MRI scan,’ says Professor Gaffney.
‘Even then, the radiologist needs to know which area to scan and how to interpret the results.’
Delays in diagnosis disrupt patients’ lives and put them at
risk of permanent disabilities, warns the National Axial Spondyloarthritis Society, which is campaigning for a faster referral process and specific training for medics to help cut the diagnosis time.
Tom Randall, 39, Conservative MP for Gedling, Notts, spoke in Parliament in September about the need for faster diagnosis. He had textbook axial SpA symptoms aged 16, but it still took around four years to get a diagnosis.
‘I woke one day with a stiffness in my hips and knee. It was so severe I had to use a walking stick,’ Tom says. ‘The GP just prescribed painkillers.
‘I was referred to a neurologist, then a geneticist and, later, an orthopaedic surgeon — but none could find anything wrong. I was 20 when an MRI scan showed up damage to my joints from axial SpA and got a diagnosis.’
He was prescribed non-steroidal anti-inflammatory drugs (NSAIDs) and advised to do stretching exercises, but struggled with fatigue, chronic pain and stiffness throughout his 20s.
‘On a good day, I could run for a bus but, on a bad day, I would struggle even to walk up the steps at the station,’ he recalls.
It was only in his late 20s, when he was prescribed the biologic drug etanercept, that he saw any real change.
‘After I took it for the first time, I literally bounded up the station steps,’ says Tom, who injects the drug once a week.
Biologic drugs are genetically engineered proteins that target specific parts of the immune system that control the inflammation at the root of the symptoms of axial SpA.
Professor Gaffney says: ‘These drugs greatly improve quality of life. But what we don’t know yet is whether they stop people with axial SpA from developing ankylosing spondylitis — between 40 and 60 per cent of patients will.
‘But research published this year found that patients on biologics do have less progression.’
Dasha is keen to start taking biologics, but has been told the level of inflammatory markers in her blood don’t yet warrant it.
‘Axial SpA now affects the whole of my spine, from my neck down to the sacrum,’ she says. ‘I would rather start on them sooner than wait for more damage.’
Tom still gets flare-ups, but says without biologics he wouldn’t have had the quality of life he has. ‘I certainly wouldn’t have had the energy to campaign to become an MP,’ he says.
His hope is that axial SpA diagnosis times can be speeded up. ‘Since I spoke about this in Parliament, I’ve had lots of letters from people who waited much longer than me for a diagnosis — some for decades.
‘I think greater awareness of the condition among the public and doctors is key.’
For further information go to nass.co.uk