“My name is Gillian Eames, I am 69 years old, and I live in Bromley, Kent. I have two sons, Mark and Lee. My journey to diagnosis was long and challenging. I first experienced symptoms in the late 1970’s but it was about 9 to 10 years before I got a diagnosis. The lengthy delay I experienced, resulted in substantial fusion of my spine which ultimately required surgery so that I could look straight ahead rather than have my head in a fixed position. It’s been an immensely tough road but now that I’ve got the answers and treatment I need, I’m on a mission to support others with axial SpA, to put an end to experiences like mine.
It all started with stiffness in my lower back and neck during my early 20’s. When my youngest son was born in 1978 the pain continued to get worse and intensified. Over the next few years, I was constantly at my GP surgery complaining of this unbearable pain and terrible fatigue I was feeling. Each time I visited, I was told the solution was time off work and plenty of bed rest, but that just made things worse. I knew my own body and I knew there was something seriously wrong with me but kept being told it was all in my head.
As time went by, I became very depressed. I was losing weight rapidly and wasn’t sleeping because of the pain and anxiety. I started to question myself and began to believe that perhaps it was all just in my head. Maybe the back pain I was experiencing was because of my lifestyle? I was raising two sons alone after the breakdown of my marriage and was working part-time. Perhaps I was just overdoing it?
I continued to search for information that would explain my discomfort, but as I did this my posture continued to change, I became more and more stooped, I was averaging 2 hours of sleep per night and the pain was relentless. I was lucky that my ex-husband and my parents helped me with my two sons. At times I truly felt like I’d rather end my life than continue the way it was, but suicide wasn’t an option as I would never leave my children.
Eventually, I changed GP. And, after a long search, I found a doctor who stayed with me for 25 years, until his retirement in 2011. He listened to me and sent me to have X-Rays and blood tests. When the results arrived, they confirmed that I was HLA B27 positive, and I was diagnosed with axial spondyloarthritis. It was a big relief to have a diagnosis, to understand the pain I was in and to know that it hadn’t all been in my head.
At the time, finding the right care in my area was really difficult. Services for people with axial SpA were a postcode lottery and I wasn’t holding winning numbers. So, my doctor referred me to the Royal National Hospital for Rheumatic Diseases in Bath. This referral has been nothing short of life changing and I can safely say, I wouldn’t be the person I am today without the support I received in Bath. I attended axial SpA courses at the centre of excellence in Bath which gave me the opportunity to meet other people who had axial SpA and were facing a similar journey to me – these kinds of connections are crucial. I was also recruited onto the drug trial for Anti-TNFs, a treatment which has since become standard practice for people with axial SpA. I feel honoured to have been part of that process.
In 2009, I had to have major spinal correction surgery because my spine had fused to such an extent that I was having great difficulty looking straight ahead. The changes had been so gradual that I hadn’t even noticed but my ex-husband had noticed my posture deteriorating over time. The surgery was a huge success and made a magnificent difference to my quality of life and mobility.
Diagnosis and care for people with axial SpA have improved a lot over the years and most people will not experience spinal fusion as severe as mine. However, one part of this journey stays the same for everyone – axial SpA is progressive, and you must tackle it quickly. Please speak to your doctor if you have symptoms, getting answers is the only way to get help.
These days, I’m a NASS Trustee and I am on a mission to make sure anyone living with axial SpA or waiting for a diagnosis, gets the support that they need. I’ve had to fight for everything; diagnosis, treatment, disability living allowance…the lot! I want to tell people to fight for what they need. Don’t give up. If you believe a decision is not right, don’t give up.”
Gillian famously took on Bromley Healthcare when they refused to give her the drug she needed for pain relief after it was licensed. This was despite Gillian being a participant in the trial for that very drug. Gillian’s fierce campaigning paid off and, after a lot of hard work, she was granted access to the pain relief she so badly needed. From that day onward, Gillian has dedicated her life to tackling the postcode lottery that so many people living with axial SpA are forced to face.
You can watch Gillian’s campaigning journey here.