JOHN JAMES FROM THE UK ENCOURAGES GENERATING AWARENESS ABOUT SICKLE CELL DISEASE (SCD)
“In my capacity as Chief Executive of the UK Sickle Cell Society, we try our best to raise awareness about SCD. SCD is not an orphan condition; it is a group of disorders that affects haemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body. SCD affects millions of people worldwide. Its impact is felt by the patient, carers, the family and beyond. Aside from the many health challenges facing patients, there are also issues related to the impact on education of children, because SCD care often lacks continuity.
As a small organisation I think we punch well above our weight. With minimal funding, we generate greater awareness of the disease and advocate on behalf of patients. We have a lot to do: sickle cell disease is the most common genetic blood condition in the UK and it is growing.
We need the MedTech industry to keep developing and maintain their innovation streak to ensure life for SCD patients gets consistently better. Donating blood is very important and blood transfusion therapy is a hugely important treatment regime for sickle cell disease. Innovation in MedTech has meant automated transfusion is now possible, and both patients and carers alike deem automated transfusion to be a far better experience. Although it’s not for everyone, this newer technology is faster and can help lower the level of potential iron overload for patients. MedTech also plays a significant role in bone marrow transplantation, which is important for SCD patients.
As the UK Sickle Cell Society, our job is to work with MedTech, the NHS, patients, families and carers, to make all of this happen.”