Rio Landa: Choosing doctors carefully

When choosing healthcare teams, Rio Landa wants to be confident the doctors will advocate for her son, who has SMA, when challenges arise. She shares what attributes she seeks for that confidence.

You know, I think that depends on who I’m seeing. Before we did this, I kind of thought about the different audiences, and for us, finding a primary care provider or pediatrician, depending on your age or your child’s age, is really important. And when advocating for them, I think it’s first important that you find a provider that is familiar with your condition.

My son has spinal muscular atrophy. It is a rare disease. I would say it’s much more common and more well-known now because of the treatments out there and the press they’re receiving. But when he was first diagnosed, finding a pediatrician that knew about SMA was really challenging. And we moved up to North Carolina and we happened to meet two pediatricians that actually did a rotation and met patients with SMA.

I’d say that that’s pretty rare, but it’s been really helpful because they have a baseline understanding of what SMA looks like, what patients might need, and know that they might need something a little different than your typical third-grader walking in the office.

Advocating is really important for communication too. I think one of the biggest needs, and I would say it’s much more well met where we live now — we have MyChart portals — but when getting prescriptions for new equipment, just being able to ask the provider, “Hey, I’m seeing you now and it’s January, but if I need a new bath chair in May, do I have to come see you again? What if you have a two-month wait? How comfortable are you with me as well?” I think asking those questions is really important.

And our first pediatrician, going back to my initial comment about knowing about your disease, our first pediatrician we met, actually didn’t really know much about SMA, but he said, “I’m willing to learn if you can teach me.” And I said, “Let’s do it together.” And he was great. It was great. So I think that’s kind of what we look for.