What do you want others to know about lupus?

I want people to learn more about this disease and the effects of it. People know the name but many don't know what it does to a person living with lupus and those who love them.

Why is lupus a cruel mystery to you?

It starts out as so many other things. My teenage daughter was recently diagnosed and it took years of treating different symptoms before we could put everything together and obtain a diagnosis of lupus. She went for years feeling like doctors did not take her seriously and knowing that something was wrong with her and not being able to put a name to what she was experiencing. The uncertainty of what lies ahead for her is so scary. Now, she's planning her future around this disease. No one should have to do that, especially not a child.

Support this Voice