I Have Cystinosis, Cystinosis Does Not Have Me!

16th February 2009

Lauren Ellis, Manchester

Lauren Ellis My name is Lauren and I was diagnosed with Cystinosis when I was 18 months old. I was always a very sickly baby but when my mum took me to the GP he always gave the same excuse: “she’s just a normal baby”. When I should have started walking I didn’t and when my parents tried to make me walk I would scream. I never stopped eating but whenever I ate I just threw up straight after.

There was one night in particular when I was really ill so my parents decided to take me to A&E. There they did a full body x-ray and discovered I had cracked ribs as well as rickets. I was then kept in hospital for a week. It was only after this week that the doctors took my parents aside and told them that they had been watching my parents with me, making sure I wasn’t being abused. As you can imagine my parents were devastated. Luckily there was a doctor at the hospital who had seen one case of Cystinosis 10 years prior to me. She sent us to Guy’s and St Thomas’ Hospital in London. It was there that I got the treatment that I needed and my parents claim that within a week I was a totally different child.

From then I was attending regular Cystinosis clinics in London. I remember the fights I used to have with my parents over taking my medicine – in the early stages it was all in liquid form and was all revolting! I also remember having to stay in hospital to get “re-educated” on how to take my medication properly. I was about 8 and it was the first time, that I can remember, that I had to stay in hospital. I was only in there for a week, which was good, because they expected me to be in a lot longer. I can also remember a time when some people wanted to talk to me about Cystinosis and started asking lots of questions like, “do you have a stairlift in your house?” and “do you use a wheelchair?” I was really upset by their questions and remember saying “I have renal failure; I am not disabled”. I was quickly asked to go and draw a picture! I also remember that I was throwing up almost every day and that I grew tired very easily.

I received a kidney transplant at the age of 11 from my dad. I remember nearly everything, right up to the point of going into the anaesthetic room and I even remember coming round in recovery. I don’t remember ever being worried or scared about the operation because it was something that my parents had always been really honest with me about. I don’t even remember being in any pain. I recovered really quickly and was up and walking within a week. Looking back on it I can’t really remember a lot about the stay in hospital, just that the food wasn’t great and that I made good friends with not only the other patients but also with the doctors and nurses on the ward.

A few weeks after my operation I got my first signs of rejection and had to have a biopsy, the doctors managed to save my kidney by upping my steroid dosage for a couple of days. I also contracted CMV virus a few months after the operation. To treat this I had to have a long line put in – this is a line that goes from your arm into your chest. Two doctors tried to put one in, the first unsuccessfully the the second within minutes, and I have never let the first doctor live it down! I had to have the long line in because treatment was 20 hours alternate days attached to a drip (it was probably less than 20 hours but at the time it didn’t feel like it). A few months after being let home I started to get really bad headaches, like migraine. After one day of such a bad headache I could not get rid of, we decided to go back to the hospital. We discovered there that I had too much fluid round my brain and I had to have a lumbar puncture to remove it. I do remember the pain from that was much worse than from the operation! It was only after a few months when I realised that I had not thrown up once since my transplant and that I had a lot more energy now!

I am now 19 and I live in Manchester. I moved to Manchester at the beginning of last year, much to my parents’ disapproval and I am studying Youth and Community work. I am also about to celebrate my nine-year anniversary of my transplant. My dad and I are doing very well and all my medication is now in tablet form, and a lot less than my pre-op meds! I attend a transplant clinic every 3 months and a Cystinosis clinic also every 3 months. I also attend an eye clinic once a year. I find taking my eye drops the worst thing and as a result my eyes are growing more and more sensitive to the light.

I wanted to write this to encourage everyone with Cystinosis, old or young, and their parents and friends too. I know my parents would have appreciated this, as from a young age they were told I might not make it and that if I did I would need “all the help she can get”. I decided to ignore what the “experts” said and go against the norm, and I am so happy I did. I hope this encourages you in your battle against Cystinosis.

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