The flok app: Empowering us to Improve our Care and Daily Life
In the 1980s, the PKU community had no standardized dietary reference, and clinicians spent too much time creating treatment plans that only their patients would use. Virginia Schuett’s Low Protein Food List for PKU changed that. In 2014, HowMuchPhe.org converted this printed resource to a convenient and updatable format, paired with features to track and report on your diet. Today, the flok app goes beyond just diet to revolutionize personal metabolic health: we’ve developed the set of tools our community requested—that we need and that our children need—to take better care of themselves, understand their health, and get better care from their clinicians.
The PKU community was lucky to have Virginia Schuett’s invaluable contribution to dietary management through phe data. With flok, everyone on a low-protein metabolic diet gets the information they need: all foods have values for unrounded protein and six amino acids: leucine, lysine, methionine, phenylalanine, valine, and isoleucine. This means that those with HCU, MSUD, Organic Acidemias, Tyrosinemia, and Urea Cycle Disorders can now benefit from detailed dietary information of more than 10,000 foods. These values are drawn from the USDA and other trusted sources, or derived from standardized clinical estimates and incorporated into food lookups & dietary tracking.
Make it Tasty, and Convenient
Where the Low Protein Food List provided vital data, CookForLove.org has long provided our community with something equally important: a chance to enjoy and explore food without sacrificing taste, creativity, or flavor. These recipes are a part of the flok app (CookForLove.org will also continue to host these recipes and more). Store and restaurant locations from the GO LOW PRO app are also integrated into the flok app’s EAT section.
All of us have busy lives with jobs, school, families, hobbies, sports, etc. The challenges of managing a metabolic disorder—whether your own or that of a loved one—are an additional burden. It’s no wonder that when your care team asks, “how have you been?” it’s hard to summarize a month, six months, or a year of your life into a few sentences. The flok app’s FEEL section allows you to keep a day-by-day log of how you’re feeling: your moods, your symptoms, new diagnoses, and lab results – metabolic or not – that help us understand the full picture of our health. By prompting you to record how you’re feeling in the moment, the flok app helps you build a robust picture of your health week-by-week and month-by-month. As you record more about how you’re feeling, your lab results, and your diet, you’ll start to better understand your health.
Let’s Get a Move on
The link between metabolism and exercise is well known. What’s less well known is how exercise and activity affect those with disorders of protein metabolism. Most of us understand that not getting enough calories puts us at risk, but beyond that, there’s very little research in this area. The flok app integrates activity data – from your phone or connected devices including Apple Watch or FitBit – with the rest of your health metrics. And these days, “activity” expands so much further: wearable technology can provide data on heart rate, heart rate variability, gait, sleep, temperature and much more. In the MOVE section of flok, you’ll be able to see your net calories (intake versus calculated burn), sleep, steps, exercise & stand statistics.
Challenge Yourself (and your flok!)
The flok app’s monthly challenges inspire you to get active – along with the rest of the flok. The leaderboard adds a little friendly competition to the mix and allows us to chart our collective accomplishments.
It’s not all Fun and Games. But Sometimes it is
Living with a metabolic disorder doesn’t mean you need to live in isolation. The PLAY section in the flok app is designed to engage you, your brain, and your body with other members of the flok. Because, after all, we're stronger together and a little fun goes a long way. Whether you’re playing a game, joining a community challenge, or enjoying an episode of The Low-Phe Life, this part of the flok app helps you connect and find joy in your community.
A Communication Tool to Help Improve your Care
In addition to helping track diet, symptoms, moods, and activity, the flok app is designed to help you bridge the gap between your daily life and check-ins with your metabolic team, whether they are weekly, monthly, or yearly, because it’s hard to summarize months of your life in just a few minutes during a clinic appointment. By enabling you to record your daily health in the moment, the flok app creates a picture you can use to understand your own health and share with your care team. This in turn helps them better understand and treat you as a whole person, not just a series of diet records and lab results.
“When I get a call from my dietitian, the first thing she says is ‘Why do you think your levels are high?’ and I immediately feel like she’s blaming me, like it’s my fault. I get defensive and I shut down. I feel like if she had a report that showed her I haven’t been sleeping well, that I’d been sick or had headaches, and that I was training for a sporting competition, alongside my diet records and blood levels, she might be able to better understand what was going on, and help me.” A.Y., adult with PKU
Living with an inherited metabolic disorder is complex. We often don’t know—nor do our clinicians—whether something we’re experiencing is the result of our metabolic disorder, of our treatment, or of just being human. In short, this isn’t easy: the flok app is designed to help. The app is a core piece of Phase 1 of our plan: it provides the resources and tools we need to improve daily management of these disorders. In the next phases of flok, our community will come together to use what we learn to better define our needs and drive research priorities to help meet them. We’ll soon have more to share about these data-driven initiatives, which flok is uniquely qualified to imagine and implement.
