Leicestershire and East Midlands mark sickle cell day
An awareness drive to educate people about the UK’s biggest genetic blood disorder has been launched in Leicestershire and the East Midlands to coincide with an international campaign.
Resources have been made available to educate people and raise awareness of sickle cell disease ahead of World Sickle Cell Day, which takes place on Monday 19 June.
The condition is a genetic blood disorder affecting about 15,000 people in England, but two out of three people with it say doctors and nurses are not providing enough information, according to the first national survey into the condition.
The campaign has been organised by NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) East Midlands. The organisation is a collaboration of NHS, universities, patients and industry turning research into cost-saving and high-quality care through cutting-edge innovation.
Resources have been shared on the CLAHRC East Midlands website, including an infographic factsheet called ‘Living with Sickle Cell Disease’.
Professor Kamlesh Khunti, Director of CLAHRC East Midlands and Professor of Primary Care Diabetes & Vascular Medicine at our University, said: “Sickle cell disease is often invisible in nature, people look well despite experiencing regular episodes of excruciating pain. But it is a serious long-term condition and is the UK’s biggest genetic blood disorder.
“This first-ever nationwide survey has been vitally important in helping us to understand the experiences of those living with the condition so we can identify how we can improve their care. On the back of the survey, we have planned some events to help increase awareness and knowledge of the condition in Leicestershire.”