Members’ Story


Meet Mina who is a 19-year-old student living with beta thalassaemia intermedia


Here’s her story

This is my first time talking about my condition. I am a 19-year-old British Pakistani, who has beta thalassaemia intermedia. 

I currently study business management at university and have just completed my first year. Both my parents carry a thalassemia trait and I was lucky enough to have the ability to produce enough haemoglobin to not have blood transfusions. 

To this day I have fortunately not had a transfusion. I go to hospital appointments every 6 months and have a blood test. I knew I had a condition where my body didn’t produce enough blood and so I had to be monitored. I am now so thankful that I do get monitored as I did not know how intense this condition could be or get. For example, the long hours of blood transfusions people need or having to need iron chelation therapy. 

Today was my first day at UKTS and I learned a lot about what thalassaemia is and where it originated from. I got to read about different people’s stories and how they bravely battled with this condition. I therefore want to help people suffering and create awareness so that people know they are not alone. Creating awareness is key so that people can get tested so that they can see if they carry this trait or not, and how it will affect them in the long term. 

Mostly my mum would take me to my appointments and we would make a day out of it and go for lunch or shopping. I never took my condition seriously as I didn’t need to. However, after learning how my condition could have been, and what can happen in the future, I need to look after my well-being. I need to be thankful for my health, and help others who are suffering. And a reminder to those who do have it as a major or are suffering in any way, you are SO BRAVE!

I want to highlight how I appreciate the nurses who calmly do my blood tests and Dr Telfer who has been with me since birth. Without them, I would not have been monitored closely and I would not even know I had this condition. I want to give a shoutout to all the parents who weren’t aware of this condition and were new to all of this. For example, my mum who had just given birth to me was then overwhelmed when she heard I may need transfusions. I am now more thankful than ever for my health and will appreciate the little things in life even more.