Vanetta Fenton, an MG patient advocate, shares how open family conversations can help loved ones recognize symptoms and respond during flares or crises.
Transcript
Because my daughter is so young. I’ve always made sure that I have equipped her with knowing how to recognize the signs.
When mommy is not feeling too well, and I make sure that we have these family discussions about what myasthenia gravis is, what it can look like, and some of the things that I may be feeling when I’m feeling a flare or symptomatic.
So we’ll have these check-ins. And it actually is helpful because we’ll kind of naturally schedule them around my doctor’s visits, which is often every three months. And, you know, I’ll just come home and I’ll say, “Oh yeah, mommy had a doctor’s appointment today. This is what happened.”
And that just naturally opens up the conversation for her and my husband as to what to do and how to handle when I’m feeling symptomatic, or if I have a sudden onset of weakness, or if I have an acute myasthenia gravis crisis.
So, you know, we’re having these conversations frequently because symptoms can vary throughout your journey with myasthenia gravis. And, you know, your reaction to medications could be different depending on what medications you’re trying, especially if it’s a new medication.
So I try to have these conversations frequently with my family, literally, you know, going through the internet and just showing my family what myasthenia gravis could look like on a person when they’re feeling symptomatic. And what are the symptoms or the signs to look out for. If I’m starting and I go into a flare or crisis.
