Understanding the disorder is vital. Many patients can reduce the frequency of their crises by careful management of their general health - and by limiting their exposure to risk factors such as dehydration, poor nutrition, stress, tiredness, and cold. Patients and their families also need information about the risks of passing on the trait or the full-blown disorder. People in high-risk populations need to understand the arguments for testing for the presence of the trait, even if they have no symptoms and no knowledge of any family history of the disorder. Testing is relatively simple and produces a clear result.

Dr Neville Clare has played a leading role in transforming the way sickle cell is regarded. When he began his work most doctors as well as patients were ignorant about the condition; many people wanted it kept a taboo subject. Now the disorder is discussed openly, with information and counselling widely available in schools, clinics, and self-help groups. During that time there have been developments and controversies over treatment too. Respect and partnership between patients and health care professionals are key to dealing with this lifelong condition. However there remains much to do to establish that ideal.