Roald Dahl's Marvellous Children's Charity celebrates World Sickle Cell Day
Sickle cell is an inherited disorder that causes a person's red blood cells to change shape because of a chemical change in their haemoglobin (a substance that carries oxygen in the blood). The shape of the red blood cells change and form a crescent or 'sickle' shape and these cells lose their elasticity, become rigid and obstruct narrow blood vessels. This can lead to chronic anaemia and painful episodes which often require hospital treatment including pain management and blood transfusions.
In the UK, around two hundred to three hundred babies are born with Sickle Cell every year and it is one of the most common genetic disorders.
There are currently eight Roald Dahl children's nurses who specialise in haematology and support families affected by blood conditions such as Sickle Cell. Roald Dahl nurse Edith works within the community, in schools and health services to provide expert care and support to children like Taye and Tyrell - two brothers who both have Sickle Cell and receive regular treatment with her.
Roald Dahl nurses like Edith are not only a lifeline for seriously ill children like Taye and Tyrell, but also for their families, including their Mum Lisa. She says, "Edith is so patient, caring and honest. Edith being there on the end of the phone for advice and support calms me down. She gives me strength and has taught me how to manage the boy's condition at home. She's given me confidence and it's meant that they spend less time in hospital. Edith has also visited the boys' school to help the staff and pupils understand about Sickle Cell. She knows the boys so well, we feel that nothing is impossible with Edith on our side."
Roald Dahl's Marvellous Children's Charity is currently raising money to help fund a new Roald Dahl Clinical Nurse who specialises in Paediatric Haematology at Luton and Dunstable University Hospital NHS Trust. You can donate to help us here.