Jodi Enders resides in Florida, where she loves to fossil hunt and paddle with manatees in the springs. She describes how living with myasthenia gravis has shaped the way she approaches treatment decisions, the uncertainty that comes with weighing risks and benefits, and why doing your best with the information you have helps guide deeply personal choices.
Transcript
Really, when it comes down to choosing MG treatments, unfortunately it’s a game of, what do I need to do for my life? What’s going to put my life more at risk, my health more at risk?
It’s not really down to a comfort level thing when it comes to choosing treatments. Usually it comes to just like, how much do you care about your life? Do you value your life?
It could be a hard decision for sure to choose to do new treatments, because you never know how your body is going to react. You never know if it’s going to pay off. I wonder all the time when I started my treatments.
The first line treatments helped me, and then I was put on a long term immunosuppressant. And I always wonder, like, did I need that immunosuppressant? I could have been possibly fine with just the first line treatments, but you never know. You know, and your doctor’s not going to want to take that risk.
Of course, you could sit there and start small and increase your dose, but it’s hard with an immunosuppressant, because it takes months to sit there and take effect.
There’s all the thinking of, what if, what if, what if? But it’s all just about trying your best, trying to make the best decisions. And I think that’s really a key thing to keep in mind when you’re deciding whether to take that leap to try a new treatment.
