Sickle cell patients share their experiences with the last NHS Chief Executive Amanda Pritchard

Sickle cell disease (SCD) is a group of inherited red blood cell disorders. People with SCD have abnormal hemoglobin in their red blood cells, causing them to form a sickle or crescent shape.

Common symptoms include episodes of pain (sickle cell crises), anemia, swelling of the hands and feet, frequent infections, and delayed growth in children.

SCD is usually diagnosed through a blood test that checks for the presence of sickle-shaped cells and abnormal hemoglobin. In the UK, newborns are routinely screened for SCD.

Treatments include pain management, hydration, blood transfusions, medications like hydroxyurea, and in some cases, bone marrow or stem cell transplants.

Management includes pain relief medications, staying hydrated, avoiding extreme temperatures, and sometimes using blood transfusions.

With advancements in medical care, many people with SCD can live into their 50s or older. However, life expectancy can vary based on the severity of the disease and access to medical care.

SCD can cause chronic pain and fatigue, impacting daily activities, education, and employment. Regular medical appointments and treatments are essential for managing the disease.

Currently, the only potential cure for SCD is a bone marrow or stem cell transplant, which carries significant risks and is not suitable for all patients.

SCD is the most common genetic blood disorder in the UK, with around 15,000 people affected. It is more prevalent in people of African or Caribbean descent.

Support includes NHS services, specialist clinics, and organizations like the Sickle Cell Society, which provide resources, advocacy, and community support.

The NHS provides comprehensive care for SCD, including routine screenings, specialist care, emergency treatment for crises, and support services.

Lifestyle changes such as staying hydrated, eating a balanced diet, avoiding extreme temperatures, and managing stress can help reduce the frequency of sickle cell crises.

Ensure they are hydrated and comfortable, provide pain relief if available, and seek immediate medical attention if the pain is severe or other symptoms, such as fever or breathing difficulties, occur.

Blood transfusions can be used to treat severe anemia, prevent stroke, and manage complications. Regular transfusions may be needed for some patients.

Research is ongoing into new treatments such as gene therapy, which aims to correct the genetic defect causing SCD, and new medications to reduce the frequency and severity of pain crises.