“Sickle cell took away my childhood” Musonda Mwilwa
My name is Musonda Mwilwa. I am 27 years old. I have Sickle cell anaemia. I am in my final year of medical school. I was diagnosed with sickle cell when I was nine months old. I was constantly crying and when I was taken to the hospital, there were two different diagnoses, one was leukemia and the other sickle cell. My mother decided to come back to Zambia and Prof. Chintu diagnosed me with sickle cell anemia.
As a child, I remember being constantly sick, in pain and was given injections very often. Those are images that have remained in printed on my mind, being hospitalized and being in pain. At one point I nearly died because at that time I had malaria. With this myth that we do not suffer from Malaria, no one checked for it, instead, I was treated for every other infection. Again, Prof Chintu pointed out that it was Malaria. I was treated with quinine and recovered.
As a child I was limited. I did not play as much as others did. If I overdid it, I would end up being in pain, sometimes hospitalized.
It is sickle cell that inspired me to do medicine because every time I fell sick, I would tell my mother that I wanted to study medicine so that I could help people who suffered like me. Unlike others who dislike the hospital, I have always wanted to be in the hospital so that I could help people.
Sickle cell pain took away my childhood. I feel I had to mature earlier than most because I learned to pace myself, to know what was good or bad for me to avoid crisis and hospitalization.
I am different from my siblings and even friends. I always wondered why me, why was I different?
I hated being called “the sick child” by my mum’s friends to the extent of telling my mother to tell her friends not to call me that. I had become a teenager and resented anything about sickle cell. By the age of 13, my crisis had become so rare. This went on until the age of 18 when they suddenly came back in full force. At one point I was hospitalized for 3 months.
It was a time I realized who were my true friends because I lost so many. I think this is one of the biggest challenges of having sickle cell. You lose a lot of friends. It also dawned on me that I had sickle cell and had to accept it. I also started having a more frequent crisis. I was also hospitalized more often.
I am still struggling with a lot of pain and being in school with all the stress has not helped.
But I feel happy that I am achieving a dream I had all my life. And I am almost there.
I am passionate about helping people with sickle cell as well as other blood conditions because these are conditions that are neglected. They are considered not important. I am an advocate and I want to be a voice for many who suffer from these conditions. I want to change the perspective of people who call us addicts or pretenders. People look at my body size and think I can’t have sickle cell as if there is a specific body type for sickle cell. Especially for older patients. I feel we struggle the most.
I also found that dating is difficult, maybe because when a guy sees a crisis they get thrown back.
Sickle cell has made me a strong woman. I never think about giving up even when I am in a crisis. I am an advocate and I want to inspire more people to live fuller lives. I even started The Voice a Facebook page where I talk about my journey.
I try to live my life best as I can keeping in mind that I must be careful.
