Tell us a little about yourself?
I am 24 years of age and I am from Bradford.
I was diagnosed with beta thalassaemia major at a very early age of 3 months and have been receiving regular blood transfusions every 2-3 weeks and nightly injections for iron chelation since then.
Despite living in Bradford, I recently took the momentous decision to transfer my care to the unit in Manchester and London and even though it is time consuming having added on an extra 40 miles each way to my journey for necessary treatment, it certainly is the best decision I have ever made. It has given me a new purpose in life almost, as having a team who is caring and interested in my wellbeing has made a huge difference to me.
Can we just take a minute to appreciate how times have changed? If feels like just yesterday I was running away from my mum who, after spending a long time every night preparing the desferal mixture necessary for my nightly infusion, taking almost another hour, searching through the rooms and cupboards, to find me just to stick a needle into my stomach which was attached to a bulky machine. This of course resulted in me being restricted from almost everything afterwards in order to ensure that I didn’t damage the machine or myself.
I now have a picc line which allows me to have desferal painlessly through a tube in my arm. It has made life much easier and much more convenient. Spoilt aren’t I. I can now carry on with life as a normal person and it no longer feel like chore or restriction. Wow, no more nightly needles and a device that is compact and as light as a balloon. Can’t go wrong can you? It also made a huge difference not having to dilute the desferal from scratch as I now get them pre-mixed and delivered to my doorstop.
In addition to this, I also have insulin dependent diabetes and as a result I am constantly expected to check my blood sugars. In case you didn’t know most people have to prick themselves before and after each meal. As you can imagine it is not the best of situations and your fingers often become numb. I am also thankful to the wonderful advances in technology in creating a pain free device which allows you to scan your blood sugars. Baffling right? I know I genuinely cannot believe it myself sometimes, it is as simple to use as a contactless payment card. Best of all, you can scan with your mobile phone to monitor your blood sugar levels.
Amazing right! It is smart enough to keep tabs on my blood sugar, preventing me from too high or too low blood sugars (hypoglycaemia). Since having the Libra sensor I have been able to control my diabetes amazingly and it has increased the quality of my life in a way I never imagined.
I am also really lucky to finally be managed by the amazing Dr Farrukh Shah and my consultant Dr Nandini Sadasivam. They have both been helpful in inspiring to me to take control of my own health and have helped me to build my self-confidence necessary to lead a normal life.
Living with a chronic condition throughout, my life has been full of ups and downs. Despite most of the challenges faced, in 2018 I managed to graduate in law whilst revising for my exams on a hospital bed with several spinal fractures. Dedication I know right, but I refused to let my condition get the better of me or use it as an excuse.
I am also extremely grateful that I have parents who were very supportive and always encouraged me to understand and research all I could on my condition. They encouraged me even from childhood, always ensuring that I attend relevant seminars, national and international conferences. Their support and acknowledgment have helped me to access relevant knowledge and this has moulded me into the strong individual person I am today.
I am really excited for the future, with gene therapy and other upcoming treatment options around the corner, really makes each new day appear much brighter!