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These people living with an invisible condition are doing their best to raise awareness about it

In 2013, an inquest found a failure to follow basic procedures contributed to the death of a young woman called Sarah Mulenga after she called the emergency services while having a sickle cell crisis. Two trainee paramedics refused to take the 21-year-old to hospital, her condition deteriorated, and she later died.

The high-profile case led to a number of changes for the better, but there is still a long way to go, those who have the condition say.

Kehinde Salami, 36, told BuzzFeed News that many new treatments were still not being made available on the NHS. “The care and treatment for sickle cell has gone a very long way in the last 15 years. However, there is a long way to go, especially as sickle cell medications currently [available] are not free on the NHS and there definitely needs to be more progress.”