Monday, 13 May 2013
It's true, deaths are rare in comparison to times when less was known about the disease and how to manage it.
But if someone close to you were one of the people who did die from lupus, you wouldn't really care that it was "rare" would you?
Having a condition which has no cure is frightening. Many people with lupus say they'd rather they'd had cancer, because then there'd be some hope of being cured... not just living with this ticking bomb which may or may not randomly decide to take out some vital organ needed for survival.
For lupies, so far, there's no hope of being cured (please keep praying for the researchers who are working to change that), only of keeping it under control. Because lupus is completely unpredictable, that means there's no way of knowing which of us will be those "rare" deaths.
It's not something any of us want to dwell on. But it's a reality we are all aware of.
There needs to be far more awareness of lupus, and more funding for research. We need a cure: the sooner the better.