Chronius Health

Introducing Chronius Health, the platform empowering patients with #chronicillness to take charge of their care. Made for patients, by patients. Want to learn more? Thread below 🧵⬇️

@ErinMariLee So glad you got the care you deserve! We're working on a project to highlight challenges that patients with complex, chronic illness face in their care journey. The goal is to help ppl better advocate for themselves. Might you be open to sharing your experiences in an interview?

Even before medicine figures out evidenced-based treatment plans that work, health care providers can still reduce suffering and offer hope. The care I received this week was exceptional. I am so lucky. But this should and could be the standard.

I had a couple of really positive interactions with the medical system this week, and want to share some of the things my care team did that made a difference. 1) Because I have #POTS they pumped me full of a ridiculous amount of fluids for my vennogram. I didn’t have to ask.

A must-read from @imaniperry, who writes powerfully about her care journey with Lupus (and also speaks powerfully, in her audiobook : audible.com/pd/A-Dangerous… )

Starting a thread to collect articles that shed light on what it's like to be on a care journey with a complex, chronic disease. Feel free to share any that might be helpful in educating a friend, family member, coworker, etc. on the reality of living with chronic illness. 🧵👇

A survey from @carta_health shows that most people (60%) don’t have immediate access to their medical records, and 17% don’t know if they do. Everyone deserves easy access to their health data - it belongs to you! businesswire.com/news/home/2023…

Almost the New Year😮 Which means it's about that time for some "year in review". See here for a Rheumatoid Arthritis year in review, and one for Lupus, as described by physicians associated with the American College of Rheumatology: rheumatologynetwork.com/view/rheumatoi…

@CNN If you're reading this and: - You're thrilled EDS is getting the attention it deserves - You want to contribute to spreading the word about what EDS patients go through ...then consider sharing the details of your care journey via our anonymous survey: qfreeaccountssjc1.az1.qualtrics.com/jfe/form/SV_6P…

Hypermobile Ehlers-Danlos syndrome is a connective tissue disorder that makes bodies bendy. When Sarah Lazarus' daughter was diagnosed with it, she discovered that the majority of cases are going undiagnosed for decades. cnn.it/3YOuTKf

This is a powerfully-written account of Ehlers-Danlos Syndrome, with many points that will likely resonate with people who live with chronic illness.