2 minute read
LIVING WITH SICKLE CELL
IF NOT ME
THEN WHO?
Nneka Smith is a diagnostic radiographer, mum, blogger and self confessed ‘medical nerd’. She lives with a form of Sickle Cell disease and is involved in clinical trials to improve the lives of people like her. She tells her story to MC magazine to show there’s hope...
Nneka and her son.
I’m competitive, strong willed, independent, netball and sport obsessed. I’m hyper, can jump like Tigger, I could talk for GB, I’m a bit of a terrier when I’m on to something. I also have a blood disorder known as HbSC disease, a variant of sickle cell disease. My red blood cells are crescent moon shaped rather than doughnut shaped like most people, so they don’t carry oxygen and carbon dioxide around my body. They build up and get trapped in my blood vessels, killing the tissue. It causes constant pain – but the scary part is that it can lead to strokes or other serious complications. Some people are constantly in hospital on opioids to stop the pain. I’m lucky that it only gets really bad a few times a year. On the flipside, I have retinopathy where my vision is impaired or I can’t see at all, and avascular necrosis, where the bone tissue dies due to lack of blood supply. I deal daily with pain, visual problems and more. But I’m a mother and a diagnostic radiographer. I’m on my feet, pushing around heavy equipment and caring for patients. I drink plenty, eat well and stay active. But in the back of my mind there’s always the fear that any moment I could end up in hospital. I took part in clinical trials to help people who will be diagnosed in the future. There’s very little research and knowledge about my conditions and my variant is rarely included. I’m only the second person in the UK to undertake the trial. It involves endless tests, monthly infusions of the drug – or a placebo – and a daily diary. It’s time consuming – on occasions I’ve been weighed, blood tested, cannulas fitted, work and have my infusion all in one day – but it’s worth it. The drug has already been approved in the US and is on sale – at well over $100,000 a year – but in Europe we have different standards so the research is still going on.
If all goes to plan it would mean people like me would experience fewer crises and hospital admissions. We wouldn’t be in pain like we are now. The next step is to find out if I’ve had the drug or the placebo. Eventually everyone who needs it will be offered the drug. It’s been a long process, but an exciting prospect...”
Follow Nneka’s blog at: Invisible 30something Find out more: nhs.uk (search Sickle Cell) Sickle Cell Society: sicklecellsociety.org
