Your knowledge matters: The power of what you notice about your health

What does it mean to have the gift of good health? 

You know it when you feel it. You also know when health issues have become a hindrance to your life. It’s as simple as that. 

This is at the core of why, when you arrive at a medical appointment, the clinician asks how you’ve been doing, why you’ve come in today, or what’s been bothering you. Ultimately, how you feel matters - and it’s one of the most important measures of your health.

In some cases, how you feel is really the only thing that matters. 

We had an interesting experience as a family last winter - we were told on multiple visits to the cardiologist and the pediatrician that my infant son’s blood pressure was measuring very high. This was pretty terrifying - we would rush to soothe him any time he got a little upset, day or night, because we were so worried about his blood pressure spiking! 

The cardiologist and the pediatrician were both pretty unconcerned, because baby T was pretty obviously feeling just fine (except for his eczema…but that’s another story). Despite a medical measurement that looked frightening and out of the ordinary, T was a happy, energetic baby - there were no symptoms to suggest that anything was going wrong. We were keeping careful watch, but had nothing to report.

Ultimately, we got to a renal specialist, who laughed - apparently they see kids like this “at least once per week”. Turns out, to get any believable reading of blood pressure for an infant, you need to use a doppler alongside the blood pressure machine, and no one outside of the renal team uses one regularly. With multiple repeated measurements using the doppler, it became clear that T’s blood pressure was actually borderline low. 

Obviously, there can be hidden illnesses that don’t show up with symptoms for a long time, or where the symptoms don’t clearly point to the full underlying issue - so there is a time and place for other types of measurement, like blood pressure, blood tests, MRIs. Yet these medical measurements, on their own, can’t tell the whole story. 

Ultimately, the first question remains: “How are you feeling?” But it’s also so hard to describe! It can seem nearly impossible to boil down all of the things that you or a family member are feeling to a simple response.

This is what we work on at Folia. How do you measure how someone is feeling, on any given day and over a longer period of time as things change? How do you make it possible to create a simple answer to “How are you feeling?” 

You start by making it possible to capture all the small things that a person might notice on a given day. You collect a little information on a bothersome headache, joint pain that’s getting in the way, fatigue or a feeling of being out-of-it that’s keeping that person on the sidelines. 

Then you simply keep collecting that same information, every time it’s bothering them or when it starts to feel better, over weeks or months - and you begin to see a picture of how they’re doing. Layer on some other information on what treatments or other things, like drinking more water, that person is trying to feel better, and whether it’s helping or not. Now you start to get a picture of what might be going on. You start to have an answer to: “How are you feeling?”

This might seem basic - but it is incredibly powerful. Imagine having that same information across dozens or hundreds who are dealing with similar issues. Now, you start to get a clearer picture of what that condition even is! For example, about 70 people living with sickle-cell disease, collecting information on what they were feeling for 3 months, made it possible for our team to research - and share with the largest gathering of hematologists in the world  at the American Society of Hematology’s (ASH) 65th Annual Meeting and Exposition - a new understanding of which symptoms are most bothersome to people living with sickle-cell disease, how different people experience different combinations of these symptoms, how often people are experiencing pain crises that are affecting their everyday lives, and the effect that common treatments might be having on those symptoms. All of this, from 70 people, over 3 months, sharing their own knowledge about their health. (You can read more on symptom burden and treatments here and factors linked to pain crises here.)

Your knowledge matters - A LOT. 

And just imagine what would happen if we combined it with what other people are noticing. That’s the missing piece - and the path to helping healthcare make a lot more sense.