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People living with sickle cell disease in the UK say they are too often misunderstood and mistreated when they seek medical care.
The inherited blood disorder causes red blood cells to become sickle-shaped, blocking blood flow and triggering episodes of severe, debilitating pain.
Some patients say NHS staff have dismissed or underestimated their symptoms, leading to delays in treatment. In some cases, concerns over the standard of care have been linked to preventable deaths.