Amy, on advocating for a methodical approach to CF

This winter, we’re excited to be speaking with caregivers and patients who are using Folia to advocate for themselves, and to move closer to the best possible care for themselves or their loved ones.

Sarah, our intern from the MIT Sloan School of Management, was kind enough to conduct this interview with Amy - a mom who is advocating for a methodical approach to managing her son’s CF.

S: Hi Amy! Thanks for taking the time to speak with us. I’d like to start by understanding the background of why you’ve been using Folia.

Amy’s son, Shaun

A: My son Shaun is 10 years old and has cystic fibrosis. As anyone dealing with CF knows, we do a lot of work to keep him healthy. For a long time we did daily treatments, medications and 4 doctor visits a year – with all of his efforts, Shaun was able to maintain good health.  But last year, his pulmonary function unexpectedly plummeted; and, after a hospital stay, monthly follow ups and a LOT of new medications, there was no real improvement.

At that moment, I told everyone to “freeze.” We were measuring pulmonary function once a month but not figuring out why it wasn’t improving.  Shaun feels well overall, and I wanted to make sure we knew how all of these changes were helping to improve his pulmonary function on a daily basis rather than once a month at our appointment…so I said we’re going to do one thing at a time.

S: That makes a lot of sense! How did you decide to start using Folia to help?

A: I found Folia from a friend who recommended it to other CF moms. Since last year, I wanted to better understand what is affecting Shaun’s PFTs and see how that might change based on medications and treatments. In addition to pulmonary function, we wanted to see how different foods and medications affect his GI issues.  I want to track how things change – for example, if we eat a yogurt every single day, is his stomach different than if we didn’t? If we take a certain medication only in the morning, I can have a conversation with Shaun’s doctor and say, “Listen, I’ve noticed on days that he takes Ranitidine in the morning, he is less likely to have a problem with his bowels, can we change the timing of this medication so it’s consistently taken in the morning?”

Folia has given me the ability to remember. I use the app to go back and remember which symptoms we were experiencing, and then to see what Shaun and I were doing differently at that point. Folia’s ability to look back is key to help me understand. It takes me 30 seconds to put my information in the app and then I know I’ll have that information in the future. It’s been pretty effortless on my part. It's another text message and another thing to do in regard to our care, but Folia creates the setup for you and if you want the information, it's a simple, simple way to get it and learn.

S: I’m really glad to hear that. It sounds like the next step would be to bring the data back to the clinic - have you been able to do that?

A: I recently used the Folia data in the clinic, to show them what I was tracking. I asked the care team what would they like to see. They brought up the Ranitidine, and how different things might be impacting its effectiveness. At their suggestion, we added some tracking items related to food to see how the bowels are affected and we have started tracking exercise to see the impact on Shaun’s lung function.

Chronic illnesses are such a personal experience and the Folia team is always accessible. It’s invaluable to have someone who’s willing to help you with the tracking.

S: That’s great! What are your plans for the new year?

A: Going into 2019, we are at a little bit of transition point and still trying to get back to baseline. Shaun has to do more for his CF than ever before, and I want to make sure we are consistent.  I especially want to track each day on Folia, so that we have as much data as possible to determine what is helping and what isn’t.  I want to be able to learn from what we’re doing. This year, I hope to continue to be consistent with the tracking because there’s so much value in the history, the data, and being able to learn with it to help Shaun.

S: That sounds like a plan. Good luck, and we’ll check in to see how things are going!