Pinned Tweet
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 🧵⬇️
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-Dangerously… )
An excerpt: A Dangerously High Threshold for Pain nytimes.com/2023/03/06/well/…
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/2…
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…
This is a powerfully-written account of Ehlers-Danlos Syndrome, with many points that will likely resonate with people who live with chronic illness.
"The 2009 rare diseases study found that during the quest for a diagnosis, 58% of EDS patients consulted more than five doctors, and 20% consulted more than 20.
The consequences of not getting diagnosed for years can be devastating". 1/
cnn.com/2022/12/24/health/hy…


