This story demonstrates why I have passionately been a advocate for pushing for a cure to this dreadful disease for many years
Virginia Commonwealth University researchers asked 232 sickle cell patients to keep diaries.
The Annals of Internal Medicine study found many experienced daily pain – but many tried to cope with it at home, rather than seeking medical help.
Previous research has assumed that, if patients did not seek help, then they were not in pain.
Sickle cell disease is caused by a mutation in a red blood cell gene that changes smooth, round blood cells into a sickle-shaped or C-shaped cells that are stiff and sticky and tend to clot in blood vessels.
When they get stuck in small blood vessels, the sickle cells block blood flow to the limbs and organs and can cause pain, serious infections, and organ damage, especially in the lungs, kidneys, spleen and brain.
Pain can be both acute – in which case it is known as a crisis – and long-lasting.
In the current study, over half of the sickle cell disease patients completing up to six months of pain diaries reported having pain on a majority of days. Almost one-third had pain nearly every day.