SHARE YOUR EXPERIENCE: TOHEED AJANI – SICKLE CELL PATIENT
I suffer ‘crisis’ pain at least once a month, sometimes 4 times or more, it is a painful process and it makes me feel so alone with my pain. As the oldest of 4 children I would like to be responsible for a duty of care for my siblings but my health holds me back and during my studies I fall behind a lot due to the fact that term time is largely during winter months and this period really affects my health, happiness and motivation for life itself.
I am hoping I can undergo a stem cell transplant, I would like to live a life without fear and hopefully thrive for more in my chosen career as an Architect.
Here is Toheed’s journey:
I began to feel unwell from the age of 5, at first my parents didn’t know what was going on until they found out I was suffering from sickle cell disease, I was always behind in my education as I always struggled to stay well or participate in group projects and sports.
I was moved from Nigeria to the UK by my Parents to escape the risk of a malaria infection and also to give me a better chance of survival.
I made a promise to myself to change my life around but I kept getting sick and loosing will power, I started to feel stuck in one place.
I couldn’t help but see myself as a small boy smaller than most of his classmates but very smart and trying harder than most too live a simple life, this was me I said and this gave me strength.
I pray a lot, mostly every night, especially when I am in pain, I just say “Thank you Lord for the blessing you have provided me” as I believe my life is a message to those who are healthy and still not living life to the fullest.
I am looking to turn my life around for the sake of my family, siblings and little nieces and nephews and my passion for Architecture I would like to live a long enough to do something for Nigeria and Africa in terms of Country development but I am afraid I might not have the strength, or health to achieve.
I would like to live life without fear, not wondering if I can travel, or if I don’t drink 2 litres today what will happen, I thought eventually I could get use to the pain, but it’s always new to me each pain episode is always painful and I can never be trained or prepared enough for it. After each crisis it’s like starting life all over again, whilst I have missed out on so much….
Due to Toheed’s sickle cell diagnosis, he has had to receive blood transfusions as part of his ongoing treatments.