wordsmakethings

Hi! Thank you so much for sharing! Because you see health providers every 4-6 months, do you zoom out and reflect on how the process of managing your condition can be improved? Like do your providers talk with one another, or is it up to you to carry around a binder with all of your information, or do you use an app to keep track of things? Thank you!

Hey I just Googled this, written from someone who has Addison's - hope it helps: https://www.addisonsdisease.org.uk/so-just-how-do-you-tell-your-family-friends-that-you-have-addisons-disease

Thank you so much for your answer!

Not sure which country you're from, but that your providers don't talk is unfortunately what seems to be the norm: the patient is responsible for managing the process that can be hilariously complicated.

I'm really curious about how virtual care will change this. The pandemic has accelerated health care tech use years ahead of what it's been a few months ago and I'm curious about the access to information patients will demand (and hopefully get) as this continues to evolve.

A colleague (hemophilia patient) collaborated as a patient advisor on this cool app that has really empowered him to manage his condition better: https://www.hemophilia.ca/my-cbdr/.

I literally just Googled this, but I wonder if something like this might interest you for keeping track of stuff to look for patterns: http://flaredown.com/