Personal Story
Terry
I am now 86 years of age and have been living with Pernicious anaemia for just over 30 years. Getting a diagnosis for this disease was not a straight forward journey as many people have experienced.
I had an overactive thyroid in my early thirties and this resulted in having part of my thyroid removed. In hindsight it appears as though I was destined to have autoimmune problems during my lifetime. It resulted in having part of my thyroid removed and for quite a few years after the event things seemed to settle down. Eventually the thyroid went underactive and I now have to take thyroxin every day. I often wonder, and of course have no way of knowing, if this was the beginning of my autoimmune problems.
Like most people I had never heard of PA but strangely I do remember listening to Children’s Hour on the radio; I am of course of that generation, and I clearly remember a description was given about a rare disease. It must have been PA, for I know of no other illness that this treatment has been used for. It was eating a raw liver sandwich! You can imagine the impact that had on me as a child and I never forgot it. Thank goodness treatment has now moved on to just a quick injection every few months.
The actual progress of my illness was very slow and it is difficult to remember all the events, but the two main effects of the illness do stand out clearly in my mind. The first big event happened whist I was working as a College lecturer. At this time I had a car journey to get to work every day. One day, on arrival, I could not move my legs without a fair deal of pain; all my leg muscles seemed to have stiffened up. Gradually, the muscle pain spread to my back and arms and it became quite difficult to cope with. Eventually, after yet another doctors visit, I was diagnosed with polymyalgia rheumatica and sent off to the local hospital to see a specialist in rheumatism.
After several visits to the specialist with no real improvement, she declared I had had every test known to man and that they could find nothing wrong with me. Obviously, this was a low point and I felt it was a way of saying that I was wasting everybody’s time and that I was making it up. Time drifted on and I don’t remember things improving much, but I guess we human beings are very adaptable and learn to cope. I was considering early retirement, as the college amalgamated with another college and they were getting rid of the old guard. However, in the early 1990’s I did notice a change in the progress of disease, and eventually left because of health reasons.
Once more off to the doctors. I explained what I was experiencing feeling rather sheepish about telling him about a meal just sitting in my stomach. He was however excellent and there was no fuss; he just said I think we need a blood test and I will see you in a couple of days. On returning he said you have PA and you need injections of B12 for the rest of your life. As simple as that, whilst it was a shock and completely unexpected, there was a huge sense of relief that something had been discovered. After the loading doses my life turned round, and here we are 30 plus years on, and I still inhabit this mortal coil. There are times I feel an earlier injection time of 12 weeks would be good, but hey, I’m still here and I will forever be grateful to that doctor and for that simple blood test. It proved to be life-changing.