Kristina Kelly, a patient advocate, why clearly defining serious MG symptoms and emergency situations can help patients and caregivers know when to seek immediate care.
Transcript
I have informed my husband if things were to go wrong, the steps that he should take.
And I think what’s most important, what you sort of learn through trial and error whenever you have a chronic illness, is to define what trouble is — to define what bad is.
So instead of saying, “Well if I start to look bad, or things start to not look so good, you probably should call for help, or you should probably take me to the emergency room.” It’s just really vague. People can define trouble or bad in all sorts of different ways.
So we, you know, sat down and said, “OK, what is like uncomfortable versus scary? What does that look like?”
So when we talk about breathing issues or I’ve had moments where I have fallen and I feel paralyzed, like I can’t get up, you know, those are emergency situations. That’s when, you know, we need to have either him take me to the emergency room or 911 is called.
