When I was a child, I used to suffer from these painful episodes concentrated in my joints. I used to be tucked into bed by my mum and start crying about the pain in my joints, so powerful I wouldn’t be able to sleep. She would put a warm compress and some vapour rub on it, and the only thing I could do was close my eyes tightly, hoping I would fall quickly asleep.
My mum would take me to the paediatrician (in Italy), and they would say, “It’s just growing pains” so I learned to tolerate the pain and not question it, occasionally crying because of it, but nothing much to be done. At 8 years old, I started training in long jump and triple jump, infrequently for many years, and then at 13, I began regularly twice per week. And once I started regularly, the crises began to come back. For many years, I suffered in silence until I was 16, and that’s when it was further investigated. I was referred privately to the orthopaedic department, where I was told to take vitamin D and do a blood test.
At that point, I moved from the paediatric GP to my adult GP (in Italy, at 16, it is when it gets switched), and my results went to my new GP. My mum received a call where they told her that I would require an additional blood test because of an anomaly that was detected.
After the blood test, I was told to go to the hospital, where I was given the news of having sickle cell trait. The consultant explained to me that I had 36% of HbS and that it was the reason I was experiencing painful crises after intense training. I was only advised to take ibuprofen, stop my intense training, and be mindful of my water consumption and oxygen levels when doing activities that could leave me breathless.
I recently was taken under the care of a brilliant team in A&E at the Royal Sussex County Hospital, which took care of me and made me feel validated in my pain. I had a lot of people trying to discredit my experiences or trying to say that my pain is not real and that I can’t experience crises. That is why I am writing my story; to make it known that some individuals with sickle cell trait do get crises and to believe them, because although not as painful as the disease, they do weigh heavily on our mental health and debilitate us to some degree. What I hope to achieve with my work is more awareness in for sickle cell anaemia and for carriers who experience crisis and hopefully make their voice heard and feelings validated.
Written by Francesca Mensah