What Does Vimizim Mean to Sarah?
I currently live in my own place in Bath, having been brought up in North Yorkshire. My grandmother’s neighbour noticed I wasn’t walking properly until then I just looked like an average toddler. It took them a long time and many visits to different hospitals to find a diagnosis, eventually my parents were told after a simple urine test I had Morquio (MPS IV) when I was around five or six. When they added the label mucopolysaccharide that was more bamboozling for them! In truth no one really had documented what the lived experience would be like nor had anyone heard of it. That is still true now!
It wasn’t long after that I stopped growing, although as my mother was a mathematics teacher being one metre tall was a useful teaching aid…! I think it was very difficult for my parents as they were constantly fighting the system to get recognition of my impairment, let alone treatment for me. My first operation was to get my legs straightened at the age of eleven, as walking had become difficult, my second operation was on my hip when that collapsed. I have lost count now of how many of my joints have worn out, and I’m a long way away from the six year old girl who did ballet at school, all be it badly! The major operation I had at twenty two was my cervical fusion, I was told I was unlikely to survive as it was unusual to perform this on adults at that time. It was worth the gamble, I was very blessed and survived to return to Bath to finish my degree.
I am now forty three – but in denial about my age! I rely on an electric wheelchair but can walk very short distances, my paediatrician got me typing lessons which has been my salvation. I’ve always loved an adventure and a challenge, when things get too much I like to escape the country and have been lucky enough to travel to different continents; though not for a long time now. But that used to keep me sane! Having a keen interest in the arts, particularly the theatre, a very close friend of mine asked me to join the management group for Turtle Key Arts we have just celebrated twenty-five years. This I love as I get to watch innovative arts groups develop ground breaking projects. My role has been to support their overall strategic development and understanding of the issues faced by disabled artists and other marginalised groups. Here I gained my first insight into disability arts and with it disability culture. Taught me not to be ashamed of how I am!
I’ve lived independently since leaving school given the death of my mother in 1989. Therefore I have forged my own way in the world including getting an undergraduate offer from the University of Bath, learning to drive and running my own independent living scheme by employing my own personal assistants (with the aid of grants). As an undergraduate I read Sociology and Social Work, during my time there I was also elected vice president of the University of Bath Students Union. When I first left university I worked as a community development worker, setting up a forum for disabled people living in Bath and North East Somerset as well as other stake holder lead consultation projects. I then moved to work in local government and also undertook freelance projects focussing on disability equality and diversity issues. One of the key pieces of work involved researching into how local governments should draft disability strategies to challenge discrimination, this work later informed the Disability Equality Duty (DDA). I started to undertake freelance work when my health began to deteriorate and commenced a Masters of research back at the University of Bath! Having developed a keen interest in disability studies particularly focussing on ethics and the impaired body, I was offered a funded PhD focussed on exploring disability narratives in the context of the Christian church; although the grant has run out now!
Four years ago I was in a very bad way, really struggling with my breathing, having countless chest infections and pneumonia. Every day was hard work with a lot of pain, and looking back now after three years of being on Vimizim I can’t believe quite the place I was in although at the time I knew I did not have very long. Being on the drug has changed me enormously, I realised that I was very trapped in a shell of myself. Now I feel that I’m back and hoping to remain among the world of the living, and its unnerving when I think of my age and that actually five years ago I felt an awful lot older in my body. My PhD supervisors were the first to notice the changes as my written work improved significantly, it was more focused and on point! Everyone keeps saying how well I look, the paranoid part of me interprets this as I must have looked grim before!!! I feel more socially and physically confident and my overall wellbeing has really improved. Although I still need to use my nebuliser every four hours, my oxygen levels have stablished, giving me my voice back! In addition at night I now sleep longer than an hour at a time, sleep tests have demonstrated that my oxygen and carbon dioxide levels are much safer. For me now I don’t have to have oxygen treatment and a while ago I had a cold that only lasted a few days, didn’t settle into my lungs as it normally did before! That was a shock! It really has been my little miracle!
Now I have to finish my PhD and I hope to get a career back. I am however worried that the drug will be withdrawn before I complete my studies. Given that I have noticed my body really craves the enzyme replacement treatment, I’m very scared about it discontinuing and going back to that dark place. One thing I really feel strongly about is that although I’ve outlived my expiration date, (my parents were told I would only live until I was fifteen) that children who have the same genetic lottery should not have to go through some of the pain I have, it would also in the long term save money as they would not need the assistance and support, nor face the fears deterioration brings. Vimizim is the only treatment for people living with Morquio and it’s provision would be investing in some exceptional individuals’ futures.
Sarah A. Long MRes, BSc (hons), DipSW