Young Patients Share How Hydroxycarbamide Is Transforming Life with Sickle Cell Disease
Two young patients under the care of our Children’s Hospital’s specialist Sickle Cell Service have come together to raise awareness of how the medicine hydroxycarbamide can help relieve symptoms of sickle cell disease.
Sickle cell disease is a serious and lifelong health condition. People with sickle cell disease produce unusually shaped red blood cells that do not live as long as healthy blood cells and can block blood vessels.
Tayshelice, aged 11, sat down to interview Pearl, aged 12, about her experience taking hydroxycarbamide and how it helped her manage the condition.
Pearl shared: “Hydroxycarbamide makes me feel less ill. It helps me not be in pain and I need to have less blood transfusions.
“I can be a lot more active and go out with my friends more.”
One of the main symptoms of sickle cell disease is painful episodes called sickle cell crises, which can be very severe and last for days or weeks.
Hydroxycarbamide causes changes in the blood to reduce the frequency and severity of painful episodes, chest complications and the need for blood transfusions.
Pearl added: “I would recommend sickle cell patients take this medicine as it can help you not be in pain and have fewer crises.”
Amanda Cope, Advanced Nurse Practitioner for Haematology, shared: “Tayshelice and Pearl have been brilliant in sharing their experiences and raising awareness of hydroxycarbamide, which can be a life-changing treatment for people living with sickle cell disease.”
“This video will help to reassure other children who are starting the medication.
“We’re really proud of how Tayshelice and Pearl are raising awareness of the condition, which affects around 17,000 people in the UK.”
You can watch Tayshelice and Pearl’s Interview on our Trust’s YouTube channel.
Find out more about Hydroxycarbamide by downloading our leaflet.