I now partake in many different research groups and projects to give back for all the hard work put in to get me back on my feet... 

Jack, my story

I was 15 years old and like any child at that age, I had just started Year 11 facing the last year in school and my GCSE’s. Soon this was about to become very different, as I was walking to school on my third day back my legs collapsed from underneath me and I landed face first into the pavement and blacked out. Later that day I went to the GP and they said I needed to be admitted into hospital as soon as possible. The next day I was admitted to Wythenshawe Hospital. I had several doctors come and examine me and test my muscle strength, which was very weak. I hadn’t noticed this during everyday life it was only when my muscles were tested that I began to realise how weak I was. None of the doctors I saw had any idea what was wrong with me. I was then sent to Manchester Children’s Hospital to see a specialist, after being in hospital for 2 weeks and having several tests carried out I was diagnosed with muscular dystrophy and told to come back in 2 weeks’ time for another appointment. Over the next 2 weeks my strength decreased significantly and when I went back for my appointment I was told I didn’t have muscular dystrophy as I had worsened to the equivalent of having 30 years’ worth of having muscular dystrophy in just 2 weeks.

I was referred to the rheumatology specialist and had a muscle biopsy taken, during this time I was diagnosed with Juvenile Dermatomyositis (JDM). I began treatment for this, having several different drugs. My muscle biopsy was sent to Great Ormond Street Hospital to be examined by a specialist as I was told I didn’t fit the usual pattern or the usual symptoms of JDM but that was the closest diagnosis at the time. I then received my final diagnosis after my muscle biopsy was examined; I was diagnosed with Immune Mediated Necrotising Myopathy. This is a very rare type of myositis affecting a specific Anti-body which causes my body to attack itself, when I was diagnosed I was 1 of 4 people in the world to have this condition, and the only person in the UK to have it. I then began the long road to recovery having intensive physiotherapy and different treatments to regain my strength, over the next 2 years I would regain 80% of my strength. During this time I went to college and gained qualifications in IT. I then got an apprenticeship as a technical consultant which I have recently completed and I am now fully qualified. I am also expecting my first child with my girlfriend which I am extremely excited about. If somebody had told me I would be in this position 3 years ago I wouldn’t have believed them and I couldn’t have done it without all the staff at Manchester Children’s Hospital especially the Rheumatology and Physiotherapy department. I now partake in many different research groups and projects to give back for all the hard work put in to get me back on my feet and I am treated at Salford Royal hospital by the rheumatology department with the aim of regaining 100% of my strength.

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