Wearables, Chronic Illness, and Symptom Trackers

Tracker tools and apps… questions and feedback, what are your experiences?

Image edited/mixed by Beverly Burnett from product websites (see URLs below) with ChatGPT

I was recently diagnosed with MPN, a chronic illness and blood cancer. The specific MPN I have is called ET (Essential Thrombocythemia), and I have 1.4 million (1,400,000) or 1400x10⁹/L Platelets, and I fight fatigue that hits hard some days (ER hard, and/or worthless, and/or sleep or out-of-it for 24+ hrs). Anyway, I’ve been trying to better track my symptoms and have found some apps. I wanted people's opinions and to share my experience so far… I also want recommendations for others…

NOTE 1: I have a Fitbit and would like these to integrate with it. I’d also like integration with Samsung Health (to get data from or send to). I have tried various health trackers and syncing tools, more on those later, maybe if people are interested…

NOTE 2: Be aware of the data you share with any of these apps; they may claim to be secure, but anything “in the cloud” (on the internet) that stores or collects data poses privacy risks. No system is 100% secure ever (FYI, I’m in cybersecurity).

NOTE 3: posted very similar on reddit if you are interested in the feedback there…. https://www.reddit.com/r/MPN/comments/1o2hal5/tracker_tools_and_apps_questions_and_feedback/

MPN specific:

1. https://mpntracker.voicesofmpn.com/ — free — I like this one, but some of the ranges and ability to enter data do not allow for high enough numbers for my platelets. The app is at least 5 years old, which makes me think that few people with ET use it. It is a mobile app, I like the interface, but it would be nice to integrate with Fitbit/makevisible or medical provider portals (see #3 below).

Chronic illness and General symptom trackers:

2. https://www.makevisible.com/ — $$ — App and armband tracker, yrly membership & armband is $300 for the first year. I like this so far; only had band for a week. This tracks your heart and other factors and helps you gauge your energy levels daily using Pace points. It learns from you about your behavior and symptoms, then makes a pace budget for you and helps track all day. So far, I really like this. But I would like more integration with other apps and ways to use phone sensors

3. https://novellia.com/ — free — cool app that helps collect all of your medical portal data in one place, it has security features, and helps you see it all if you use multiple medical systems with separate non-integrated portals. Cool app, but it still has a long way to go. It can’t “combine” or group duplicated information from multiple portals (drugs/prescriptions I’m taking; diagnoses from multiple portals, etc.) I’ve been providing feedback, and they seem responsive. Also, it collects all the data, but doesn’t really DO anything with it yet… not sure what their goal is there, but we’ll see. But also beware: it is the internet, and it collects ALL the medical data you let it have, so beware —no system is 100% secure ever (the same goes for all of these apps and tools, not just this one…).

4. https://bearable.app/ — $$ — haven’t tried this one, not free, anyone else try it, it sounds good, it is on my list to check out in the future….

Other:

5. nunatechnology.com — $$- wearable necklace device that listens to your environment and other stuff to to help track & predict emotions and mindfulness….. from them: “Your emotions shift every moment — calm, joyful, stressed, or grateful. nuna helps you recognize them instantly. Offers real-time support to rebalance your mood. Wearable tech for your emotional wellness journey….” sounds interesting, but costs $$….

6+. fitbit, Aura, and many smart rings and fitness trackers…

Thank you for reading my work. Please post comments below if you have any pointers, ideas, suggestions, or support.

Loveya,

-Bev

Sorry, but I use lots of ellipses… many trailing thoughts…

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