Janelle Fiesta, who lives in Honolulu, was diagnosed with SMA type 2 in 1997 at age 1. She explains how having responsive, supportive doctors has shaped her care experience.

People on my healthcare team — I like how they make themselves available. If I have any questions and I reach out to them, whether it be through our healthcare system website or through a phone call, they always get right back to me, which is awesome. Because I don’t want to be chasing down a doctor for answers to my questions, and I don’t hear back, or they don’t have any answers for me — things like that.

I really appreciate when they listen to my concerns as opposed to brushing things off. I know in the past, I’ve myself experienced where — I tell a doctor, like, “I’ve been feeling this. I don’t feel good or I feel uncomfortable. What do you recommend?” And it gets brushed off, or they tell me that if it continues on, we’ll handle it then.

But I really like doctors that listen and take my concerns seriously. Like, my PCP is amazing. If I feel like something’s off, he’s like, “OK, let’s get these things checked out for you.” He’s so gung-ho. He’ll get me X-rays, he’ll get me blood work done — he doesn’t stop until he finds out what’s going on.

And he’s the reason why I’m really particular about my doctors, because I’m like, you know, “My PCP would do this for me.” So I try to keep it to that kind of standard.

All my specialists — they’re really curious. In a sense that they weren’t familiar with SMA before, they did their research about it. And then now they’re able to answer my questions related to my SMA.

Or if something does pop up, they look into, like, ongoing research or published studies and things like that to share more information with me. They’re curious and they’re solution-based. So they always try to figure out solutions for me.