I am good at: Sleeping, laughing, being friendly and open.
I'm bad at: Eating healthily, not being in my pyjamas.

My Experience with JDM

In 2012 I was diagnosed with a severe, rare muscle disease called Juvenile Dermatomyositis or JDM for short. JDM is an autoimmune disease which means that my immune system attacks my body. It affects approximately 3 in every million children in Britain a year. I’ve never seen my JDM as a big thing or as a life changing disease, maybe this is my way of coping with it I don’t know, but in reality it is. It’s a disease that can lay in remission for years and years and then pop up at the most unexpected time, and in adults can cause Cancer which a lot of people would see as a scary thing but for some reason it’s never hit me like that. 

I was diagnosed on the 10th of May 2012 at The Royal Glamorgan Hospital in Rhondda Cynon Taff, Wales. Symptoms had been showing since about the November before and had just got progressively worse as symptoms do without treatment. Around November and Christmas time I had  struggled with severe exhaustion and was constantly tired which meant that I missed out on a lot of things you do as a 15 year old, going shopping with my friends, going to parties and so on. I had developed a rash across my hands, knuckles and cheeks and my joints had become weak and inflamed. School was a struggle because of the exhaustion and walking and participating in sport (which has always been a massive thing in my life) became almost impossible because my knees would constantly give out underneath me. Since sport has always been such a big thing in my life I chose to go, along with three of my closest friends, on a skiing trip with the school. About two weeks before going I developed a chest infection and was told that the rash on my hands was psoriasis and so my GP put me on two different types of antibiotics to treat them.

By the time it came to going skiing I had completely lost my appetite and had lost almost a stone in weight because of the loss of muscle mass and because I was hardly eating. That skiing trip is one of my favourite memories of high school even though I was completely oblivious to the fact that my body was attacking itself and that I was absolutely exhausted the whole time. By the time we’d returned from skiing I could no longer straighten my arms past 90 degrees or raise them above my head or even past shoulder height. My thighs were constantly aching; you know how they feel after a hardcore leg session at the gym, that was the sensation I felt all the time. Sitting down and standing from sitting became something I had to put my full concentration on and lying down became something I had to seriously consider because once I was lying if there was no one around to help me I physically couldn’t get up again (which was a huge advantage for my brother when he had to look after me). My Mum became some sort of carer to me, helping me to wash, do my hair, get in and out of the shower, up off the toilet, in and out of bed, up and down the stairs, everything. I was a 15 year old who had to be looked after like a child.

Once school started again after Easter half term I tried to maintain my attendance as much as I could but in reality my body just couldn’t do it. Bearing in mind I was starting my GCSE’s so missing school wasn’t ideal! After numerous blood tests and doctors’ appointments the 10th of May came around and I had an 11 o’clock appointment with my GP with the results of my blood tests. As soon as we sat in his office he informed my parents that they had to take me straight to the hospital and that they were expecting me there, with a bed ready for me. Obviously the results weren’t good and I was dreading staying in hospital overnight but the nurses were amazing and made it so easy.

My blood levels where all over the shop with my CK count at 40,000 at its worst. I was at the Royal Glamorgan Hospital for three days before being transferred to the University Hospital of Wales or The Heath as it's otherwise known. I went through a week of being pumped with steroids and going through numerous tests. In August of that year i made my first trip to Great Ormond Street Hospital where i went through more tests and had my first dose of infliximab.

I'm now at UCH London and I'm still having infliximab infusion once every ten weeks but I'm living life to the fullest (cliche I know) and will be starting university in September of this year. I'm currently working 5/6 days a week at a hotel and still manage to fill my spare time around it without being half as exhausted as I was.

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