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 🧵⬇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 🧵⬇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 🧵⬇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 🧵⬇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?
A must-read from @imaniperry, who writes powerfully about her care journey with Lupus (and also speaks powerfully, in her audiobook : https://t.co/XIpseQeC2L )
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!
https://t.co/8yUL2oOeLg
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:
https://t.co/GiUAPgkZza
@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:
https://t.co/SkeedI5XpY
"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/
https://t.co/2q6aWvYPzz