[This story is submitted by Professor Ebringer on behalf of "Mrs B," who's ESR is documented in the paper "The Use of a Low Starch Diet in the Treatment of Patients Suffering from Ankylosing Spondylitis," available online here in the Technical Papers section of KickAS]
Ms. Judy Beard writes:
It still surprises me that when I was told by the consultant rheumatologist at the Middlesex Hospital back in 1969, at the age of 20 that I had ankylosing spondylitis (AS), the news came as a huge relief. I had never heard of the disease but somehow I felt vindicated. The pain I had experienced over the previous five was not down to “growing pains” nor was it a figment of my imagination for I had been told many times that there was nothing wrong with me that exercise could not cure. It had a name and it was treatable.
To be fair to the medics, diagnostic techniques of such conditions in the late 1960’s were not as well advanced as they are now. It was thought in those days that AS was a disease of young men not women. Nevertheless, at 15, I had low backache, more prominent at night and lasting for several hours. By 17, the pain started to travel from my back to my buttocks and thighs and sometimes I felt it on one side and sometimes on the other. At 19, I had developed muscle stiffness which was worse again during the night and I had acquired a slight stoop in my posture. The muscle stiffness eased in the mornings after exercising.
It was after graduating that my two university flatmates ganged up on me and made me promise to do something about myself when I relocated to London. That is how I came to be at the Middlesex Hospital. On diagnosis I was prescribed phenylbutazone to reduce the backache and a course of physiotherapy to improve my mobility.
By the time I was 25 years old, the pains had spread to my shoulders, ribs and hips. It was then that the hospital confirmed that my ESR (erythrocyte sedimentation rate), a measure of inflammation was 55 units which indicated that the disease was very active. The upper normal level of ESR is 20 units.
It was in 1975, that I found out that I was HLA-B27 positive and that I had inherited the gene from one of my parents. This would explain why my mother’s brother also had AS. I was treated with antibiotics, phenylbutazone and other non-steroidal anti-inflammatory drugs or NSAID’s. Sometimes I felt better but at other times the pains came back. I do remember that in 1976 there was an exceptionally hot summer, and I had never experienced so much pain.
Two years later the pains and stiffness reached my neck which meant the whole of my spine was affected by the condition. I could not turn my head and had to rotate my whole body looking to the right and left when I crossed the street. During my driving test, reversing round a corner proved to be the most difficult manoeuvre, but I passed. Nearly thirty years on, I was amused, when I took part in a fundraising day on a driving test site, to discover that I could reverse a medium-sized truck into a designated parking space without difficulty, relying solely on its huge mirrors. The reason that I could do this was simply that I have had to depend heavily on mirrors ever since I passed my test all those years ago.
In 1983, Dr. Ebringer, who was then my consultant, suggested that I should try a “low starch diet”. Initially I had 3 nutritious meals a day with fruit, vegetables, fish or meat but each had very little starch. The term “low starch diet” meant no bread, no potatoes, no cakes, no pasta and no rice. It was not always easy to stick to this regime but it is now a way of life – with the occasional lapse.
I began to feel better and my friends commented that they had noticed me “running upstairs” something which previously I had been unable to do. A year later my ESR was 15 and I had reduced the painkillers I was taking. The closest underground station to the Middlesex Hospital was Goodge Street on the Northern Line and on one visit to the hospital I walked up the 166 steps of the station, when the lifts were not working, rather than going to the next station and taking the escalator. Proud of this achievement, I mentioned it to Dr. Ebringer and it is written in my hospital notes of 1983.
In 1990 I spent three excellent weeks at the Royal National Hospital for Rheumatic Diseases in Bath. Five hours a day of concentrated physiotherapy and hydrotherapy made me much more mobile.
In 2000, I completed 25 years of attendance, every 4 to 6 months at the “Ankylosing Spondylitis Research Clinic” of the Middlesex Hospital. Since embarking on the “low starch diet” my ESR was never above 20 units in 41 outpatient visits. On two other occasions it was 22 and 23 units respectively.
This account is based on my hospital visits which focussed on the pains and discomfort of having this chronic condition. I am now 57. I have had a good career and now have a demanding job as a director of a well known charity. My spine is fused and the changes are irreversible but I am reasonably straight and so far my general health is excellent perhaps because of my healthy diet. My stiffness improves the more exercises I do and as part of my regime I am glad to go
walking every Easter with my local AS group.
I will never know whether anything could have been done to reduce the effects of the disease in its early stages and I don’t dwell on that. Having ankylosing spondylitis has given me a different life from the one I was expecting but I can honestly say that it has never stopped me doing anything that I have wanted to do.