World Ankylosing Spondylitis Day is scheduled for the first Saturday in May each year. It is an opportunity to raise awareness, and share information, about this debilitating disease that many people have never even heard of.
An estimated 200,000(1) people in the UK live with AS or AS related diseases and I am one of them. To do my bit to spread the word, I have decided to tell my own story about my history with the disease, and explain why a platform such as PKB would have been, and is, incredibly useful to me.
My AS Journey
The soreness began in my left knee. I presumed at first it was a football injury, but over the following weeks and months I began to experience severe pain and stiffness in my lower back, ribs, and the peripheral joints in my hands and feet. Pretty much all over.
I was temporarily working for a local charity after completing my Masters in Politics and Economics, and assessing my options as to what career path or graduate route I wanted to take. On paper I had everything going for me, but gradually my body and the pain began limiting my options.
I visited my GP on numerous occasions, recounting each time what was happening to me. I was offered standard anti-inflammatory medicine, but they failed to reduce the pain or improve my mobility.
Eventually, after almost 18 months of back and forth with the GP, I was granted the opportunity to see a Rheumatology Consultant. At the clinic they informed me that I had AS and enthesitis of the peripheral joints. With my existing rate of disease progression, I would likely be in a wheelchair by the time I was 30. Pills were the only answer.
As my condition worsened, the solution from the medical professionals was to either up the dosage or change to more aggressive medication. Naproxen, Diclofenac and Celocoxib (all Non-steroidal anti-inflammatory drugs) were all tried with limited effect and replaced with (Disease-modifying anti-rheumatic drugs) Sulfasalazine and Methotrexate, which is a chemotherapy drug used in lower doses for some rheumatology patients.
The medications had significant side effects on me, and my feeling towards them not being the long term solution only grew, especially when I had to have weekly blood tests to ensure they were not damaging my liver. In desperation I tried all sorts of therapies, including acupuncture, homeopathy and even faith healing. All without success.
Eventually, after about two years of the disease progressing, I became physically unable to work. With no salary, I quickly ran out of savings, and found myself back at my parent’s house living in my childhood bedroom.
No job, no money, no independence and no answers. It was not where I wanted to be approaching my mid 20s. One evening I decided to review the thick folder of appointments and consultation notes. It was then I honed in on a jumble of letters and numbers. HLA B27.
I will come back to HLA B27 later on, but for the sake of transparency and to give you the full AS patient experience, I thought I would share some of the lowlights from those early years of living with the disease.
The illness lowlights
There were many, which I can mainly laugh about now, including:
- Having to be driven by my father (who was three open heart surgeries in by this point) to an industrial estate, where in a dingy portacabin, a claims assessor manipulated my joints and tried to make me do exercises I was physically incapable of to prove I was too sick to work. At the end of this miserable experience he said “Having reviewed your qualifications, you probably don’t want to be here and probably aren’t in it to defraud £62 a week of the taxpayer.”
- Being physically unable to get up and down stairs, meaning I was stuck in the bedroom almost 24 hours a day.
- Not being able to get to the bathroom during the night, forcing me to use a 4 pint milk container before the NHS kindly upgraded me to a proper urine bottle.
- Being overtaken (trying to get from the car to the chemists) by an elderly lady with one of those tartan two-wheeled shopping trolleys.
- Having to go to the hydrotherapy pool to participate in exercises with complete strangers, many of whom were moaning and groaning in agony through the various sessions.
- Losing lots of weight. I went down to below 10 stone.
- Becoming increasingly isolated from friends and social activities. No smart phones or WhatsApp in those days, so keeping in touch with people and groups of friends was more difficult and less immediate.
- Struggling with mental health – the mixture of severe pain and lack of hope led to regular thoughts about whether I wanted to continue living a life like this.
The role of technology in helping me recover
I literally crawled to the spare room where the family PC was located. After an age (dial up internet days…) I typed HLA B27 into the search engine. In my medical notes I could see I had been tested for it and it returned positive, but no one had ever explained the importance of this gene relating to the disease I was suffering.
In summary(2):
A positive test means HLA-B27 is present. It suggests a greater-than-average risk for developing or having certain autoimmune disorders. An autoimmune disorder is a condition that occurs when the immune system mistakenly attacks and destroys healthy body tissue.
A positive result can help your provider make a diagnosis of a form of arthritis called spondyloarthritis. This kind of arthritis includes the following disorders:
- Ankylosing spondylitis
- Arthritis related to Crohn disease or ulcerative colitis
- Psoriatic arthritis (arthritis associated with psoriasis)
- Reactive arthritis
- Sacroiliitis (inflammation of the sacroiliac joint)
- Uveitis
From this point on I took it upon myself to do as much research as possible, and I came across the KickAS forum. Finally, I’d found a community of people going through what I was going through. I read their stories and could relate. Most importantly of all, there was a research paper on molecular mimicry and something called the London AS diet.
To cut a long story short – there are microbes in the gut called Klebsiella that mimic HLA B27. Lots of Klebsiella equals your immune system trying to fight them. This equals inflammation. Inflammation equals pain. All over.
Or as Dr Alan Ebringer puts it (3)
“Ankylosing spondylitis is considered to be a form of “reactive arthritis” following an infection of the terminal ileum and ascending colon by the bowel microbe Klebsiella. Specific anti- Klebsiella antibodies in AS patients have now been reported from 17 different countries: England, Finland, Germany, Sweden, Netherlands, Scotland, Spain, Belgium, Slovakia, Japan, China, Australia, Canada, USA, Mexico, Argentina, and Turkey.
Over 95% of AS patients possess the HLA-B27 antigen whilst it is present only in 8% of the general population. The Klebsiella microbe has molecules which resemble HLA-B27 and this is the reason why AS patients generally belong to the HLA-B27 group.
In addition, the pullulanase molecule of the Klebsiella microbe cross reacts with type I collagen found in tendons and bone and also with type IV collagen found in basement membranes of retina and uvea, thereby explaining the pathological sites of AS.
When one eats large amounts of starchy foods (bread, potatoes, cakes and pasta), the Klebsiella bacteria feed on it, multiply and then the immune system of the patient makes antibodies against the microbe and some of those antibodies will also have activity against
HLA-B27 and against collagens in the spine and uvea, thereby acting as tissue damaging autoantibodies – hence the need to ABSTAIN from these foods.”
Recovery
I removed starchy foods (eg bread, potatoes, starchy vegetables, cakes, pasta) from my diet and within days could feel improvement in my mobility. Over two to three weeks I was walking normally again and the pain had gone from a 10 down to a 2 or 3. I stopped taking the medications and began to get on with my life.
I sent a letter to both the GP and consultant, asking a) why they had never raised this potential self management route with me, and b) will they consider this an option for future patients. I hope they took the time to read it.
One of the biggest challenges was trying to get back into employment, and having to explain the large gap in my CV.
These days I try to keep active and play as much football as possible to make up for lost time, and with the diet being similar to the popular Keto Diet, there are lots of recipes out there to keep dinner time interesting. If I ever get tempted by roast potatoes or pasta, I inevitably feel stiffness and inflammation the next day. That is always the warning sign that I need to keep doing what I have been doing.
In the last fifteen years I have had Uveitis twice (not fun) and Pericarditis (really not fun) both related to HLA B27. So I am always living with the disease, but my quality of life is pretty normal and active. I couldn’t have asked for any more than that during my darkest days.
Why PKB would have been a great help on my journey
A patient platform like PKB did not exist back then, but if it had, I feel my journey to recovery would have been quicker and less stressful. Knowledge is power, and these days a rheumatology team can easily use the PKB library to inform the patients about the different options (such as the AS diet or other self management choices). In addition to this, I would have greatly benefitted from having access to:
- My medical history. Holding my patient data digitally so I wouldn’t have to keep repeating my story with every professional I met over the years. It could have also avoided unnecessary repetition of tests, wasting NHS time and money.
- Food diary care plan. Rather than relying on Dr Google, I would have had approved guidance on my nutrition, what to monitor and who to go to if things deteriorated.
- Blood test results. Avoiding the many hours of playing phone tennis with the GP to find out my results. I would have also got to understand what they mean.
- Symptom tracker. Monitoring my symptoms would have given me the means to systematically chart reactions to certain foods, as well as share this with clinicians.
- Messaging in PKB directly with the clinical team. This would have saved much frustration and the then inability to get basic information without having to fight for it. Better for me, but also saving healthcare teams precious time on phone calls and appointments.
I am so proud to work at PKB because I know that the functions we provide at PKB are truly helping people with a wide range of conditions. Often, the service we provide can be life changing for patients – patients just like me.
- Figure taken from the National Axial Spondyloarthritis Society website.
- Taken from the Mount Sinai website – https://www.mountsinai.org/
- Dr Alan Ebringer – https://en.wikipedia.org/wiki/Alan_Ebringer