My name is Manuel, I was born almost 45 years ago in Malta (Mediterranean Sea) and I’m a university lecturer by profession.
This is my story:
When I was in my mid-teens I used to play basketball for my school team. I remember that after training and after matches, my mates used to shower and go out, but after showering I used to go home very tired and with pain in my lower back. I always blamed the pain on my flat footedness and that was that. I stopped playing basketball soon after because I wanted to concentrate on my studies, and anyway I had lost interest somehow. Then in my late twenties I started having severe stiffness all over my body and started getting tired after only a few metres of walking. The stiffness got so bad that sometimes I had to use a walking stick and finally decided to consult my gp. The gp sent me to a medical consultant “for some blood tests”. It was a very weird experience at the consultant: his second question, I remember very well, was “Are you sad?” Well, I told him I felt like some 70 year old because I had to use the walking stick and *that* made me sad, yes. He replied that he was sending me to a psychiatrist because the stiffness and pain, according to him, were only psychosomatic symptoms of acute depression. I was on antidepressants for some years, with the effect that I really got depressed and gained a lot of weight, which made me even more depressed. At one point I told myself I should quit anti-depressants and stopped going to the mental out patients clinic and the psycotherapy sessions. I had had enough of both. However I started noticing I was developing a stoop, which I blamed on my sitting in front of the pc for long hours. So I bought a membership at a gym and started doing threadmill and swimming. Soon after, swimming became impossible because the chest started hurting and I had to slow down on the threadmill because I was getting tired again after only five minutes. Well, I persisted and tried not to give too much thought about the pains, the severe chestpains in the middle of the night which, in turn, made lying down on the bed impossible. In the meantime I got married and six years ago my wife was having a baby. On the third routine visit to the prenatal clinic my wife’s gynaechologist told me, “I’ve been observing you since the first time you walked in to my clinic. You have a funny way of walking, sitting down and standing up from the seat. Have you ever investigated this? I’m pretty sure you have AS. You should go to a medical consultant immediately.” She was right. I went to the same consultant who had ‘diagnosed’ me with depression some years before and this time he took an x-ray and my spine was all fused and bent. He had no doubts, this time, that it was AS, even though the eventual result for the HLA-B gene was negative. The thing is that here medics are somewhat reluctant to give their patients information about their disease. I was only told I had AS, that this is a chronic condition and hence no cure for it, and all I could do was have some pain killers when the pain is severe and do some exercise in a heated pool. That was it: no talk of what to do, let alone of medicine. It was only after going to my heart specialist (I have routine check ups due to a family history of heart disease and high cholesterol levels) who herself suffers from AS, that I learned about Enbrel. So back to the medical consultant with a letter in hand from my heart specialist, I was finally prescribed Enbrel which made my life much much easier.
Despite Enbrel I have frequent iritis, severe pain in knuckles, itchiness on my hands, and also aortic regurgitation, something which scares me like hell. I have become shorter and when I stand or walk I cannot look up and I’m always facing the ground. But what saddens me most is that I cannot be a good father to my son: I could hardly lift him when he was a toddler, could never go down on the floor to play with him with his toys, can’t play football or basketball with him, cant take him to long walks, or go to swim with him. His wonderful mother has taught him that dad has a problem and he’s learnt to accept that his father is different from his friends’ dads, but it still makes me very very sad.
Having said that, I am extremely lucky to have married someone who gives me full support and, on top of that, very lovingly. I don’t know how my life would have developed without the support of my wife and of my little son. I’m ever so grateful for this. I try my best to go for regular walks despite the pain and fatigue, and we’ve just had a wonderful summer holiday on the mountains which was one terrific experience for me.
In conclusion, I would like to thank you for having read my story. I’m sure that most of you are very familiar with what I’ve written. Sadly in Malta there is no AS patients association and very very few people know about this condition. So thanks for the space and the opportunity. I really appreciate it.
Malta (Mediterranean Sea)