Living well with sickle cell
Sickle cell disease is the name for a group of inherited health conditions that affect the red blood cells. It is particularly common in people with an African or Caribbean family background and causes individuals to produce unusually shaped red blood cells that can cause problems.
Kismat, a 16-year-old from Hackney, was diagnosed with sickle cell at one week old. Her mother Tawa Olayiwola said: “My family are from Africa and although my sister had sickle cell growing up, I didn’t know much about the disease.
“Young children with sickle cell need special care from their parents to stay healthy. I support Kismat by making sure she makes the right food choices, and her environment is the right temperature. People with sickle cell can get very cold and tired, and it is my job to make sure Kismat is comfortable.
“Now Kismat is older she is able to manage her sickle cell well and even helps her younger sister Makenzie who has the same diagnosis. Her sister is five years old and Kismat can support her as she has already been through what Makenzie is experiencing.
“Kismat is very determined and doesn’t let her sickle cell get her down.”
Kismat is currently studying English, psychology, philosophy at sixth form and would like to be a psychologist one day.
She said: “I really enjoy college and have lost of friends. I keep fit by walking and going to the gym and this helps me manage my sickle cell.
“My last crisis happened in 2019 and I was very sick. I was in and out of The Royal London Hospital for three months while the doctors and nurses gave me antibiotics.
“My crisis was caused by being taken off Erythrocyte-exchange (EEX) transfusion and being put onto medication. I have been back on transfusions since then and been managing well.”
Kismat explained that EEX transfusion is a process where she is given new blood cells and her waste blood cells are taken away. She said: “My sickle cell currently gives me no limitations.
“I manage it through attending hospital every six weeks for my transfusion, and also maintain a good diet. I believe this keeps me well and helps prevent a crisis.”
Having the right support is a crucial part of living well with sickle cell. Kismat has been attending The Royal London for 16 years and has developed great relationships with staff during this time.
Kismat said: “Sometimes I attend hospital alone and other times with my mum. Nurse Hetti and Janet are very familiar; I know them well as I have seen them for years. The staff are so kind to me and everyone makes me feel comfortable during my day visits.
“My family also has great support from Isaac and Kim. I was shielding during Covid, and they helped arrange transport to bring me into hospital as I was high risk, they are always sorting things out for me.”
Isaac Amoh, paediatric haematology clinical nurse specialist said: “Sickle cell disease is a lifelong condition and most patients will have contact with health care professionals, including doctors and specialist nurses, throughout their life.
“The importance of building good working relationships with a patient and their families cannot be overstated. Kismat and her family have always been the model patients, they are very engaging.”
If you or someone you know are interested in taking part in reserach, you can find out how to do this on our website, or if you are under the care of a clinical team, you can speak to them.
NHS Blood and Transplant currently need more Black donors to help those with sickle cell disorder. Find our more and check if you can donate here.
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