Idiopathic Hypersomnia is quite the riddle. As a patient it’s really hard to know when we are going to have a good day or bad day, let alone knowing what causes our good days and bad days! While many Apps exist for tracking various a symptom here or a symptom there, none of them work to track the complete picture. That’s why I became so excited when I started reading about Flaredown, a new App that’s being created specifically for tracking chronic illness.
Flaredown is a way to track symptoms alongside external variables such as treatments. Through tracking a combination of quantitative metrics (such as sleep time) and qualitative metrics (such as brain fogginess) it creates a graph showing the times your chronic illness was under control, and when it was flaring up. Alongside your symptoms you can also track your treatments – the medication you take, the lifestyle changes you are undertaking and so on. The hope is that by recording and graphically representing this data it will make it easier to work out both how to avoid the things that make our symptoms worse, and do more of the things that make our condition better.
Flaredown make some pretty bold claims, and their software isn’t available yet so it’s impossible to say just how well they will deliver. But when they initially shared their list of conditions Idiopathic Hypersomnia wasn’t on the list. Well, until a few days ago!
Following Flaredown’s appeal for crowd funding on Indiegogo a group of patients in the Major Somnolence Disorder Facebook Group decided to team up and purchase the $500 Option to Fund a Condition. The condition we nominated? Idiopathic Hypersomnia!
What this means is that when Flaredown becomes publicly available it will have full support for tracking the symptoms and treatments of Idiopathic Hypersomnia. The Flaredown team will work with the patients in the Major Somnolence Disorder Facebook Group to tailor it to our needs. Plus, they promise the Flaredown App will be free, forever. This means that anyone and everyone with Idiopathic Hypersomnia can use this App to track their symptoms at no extra cost. A pretty generous arrangement!
While the Beta testing starts in 2014 the expected public launch of Flaredown isn’t until March 2015. Given how rarely IT projects run to time, that likely means we will see it mid-2015. Keep an eye on the Living With Hypersomnia website for updates as we learn more.
If you would like to contribute towards the money paid to the Flaredown Indiegogo campaign please email Lloyd for further details: [email protected]