Janelle Fiesta, who lives in Honolulu, was diagnosed with SMA Type 2 in 1997 at age 1. She shares what proactive care ought to look like.
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Transcript
For me, I’ve always really appreciated specialists who are proactive and not reactive. A lot of my doctors really reach out to me. They check in on me, which is amazing. I know they’re super busy, but they always reach out to me to see how I’m doing.
And I always have follow-up appointments throughout the year. I never feel like I’m in the dark about things.
I like being able to reach out to them if I have any concerns or questions about, say, if I’m feeling some symptoms. I’m able to reach out to them and they get back to me within like a day or two.
So a specialist that can listen to their patient’s concerns and be transparent with them — transparent in the sense that they’re straightforward and they give me the details that I need, as opposed to avoiding questions or avoiding answering questions that are important to me.
