Articles
Emotions When Choosing Self-Health Over Dysfunctional Family Dynamics
TW: If you feel dismissed by loved ones, or struggle especially from family of origin issues related to your invisible illness, this post can be triggering. As I navigate the choppy waters of my chronic invisible illness, I’ve come to a heart-wrenching realization: my family dynamic, instead of being my safe haven, is a downward […]
POTS vs. Anxiety: The Misdiagnosis Maze
In this article, there will be facts and opinions. Please take as such and ensure you speak with a well-trained healthcare or mental health provider to ensure you get the best care for dysautonomia and/or anxiety disorders to ensure you are correctly diagnosed and treated. This is not medical advice, but one person’s lived experience […]
Navigating the Holidays with EDS
Navigating the Holidays with EDSThe holiday season can bring joy, but it also tends to come with stress, pressure, and endless obligations that can wear us down. For those of us with Ehlers-Danlos Syndrome (EDS), this time of year can be especially challenging. Between family dysfunction, travel difficulties, and the societal pressure to keep up, […]
Proud Stutter
Summary: Proud Stutter is a short film featuring Maya, who grew up with a stutter she believed she needed to overcome, embarking on a transformative journey of self-acceptance. Realizing that stuttering is simply another way of speaking, she creates a podcast to amplify the voices of those who share her experience. Through candid conversations, Maya […]
Overcoming Barriers With Creativity: Watch Lego Oma
People with Ehlers-Danlos syndrome (EDS) often face physical barriers limiting access and opportunity, yet our community is incredibly resilient and adept at finding creative solutions to overcome these challenges. These obstacles, often centered around mobility limitations and chronic pain, are familiar territory for many of us. But Rita Ebel, the focus of the new Chronic […]
Chronic Illness Apps: Why Use Them and Ones to Try for EDS Management
Why Use Technology in HealthMany of us wish there was an-in-one ideal app to help manage Ehlers-Danlos syndrome (EDS) so patients and their caregivers could have an easier time managing health data, symptoms, doctors, medical records and more. Everyone knows healthcare is going digital, and Artificial Intelligence (AI) is likely to change the landscape of […]
Research News: Could a Blood Test for hEDS & HSD Be Possible?
The EDS Society announced a promising breakthrough in research they funded published September 3, 2024 by a group of Italian scientists in the American Journal of Genetics using their HEGDE registry for the US cohort. Scientists have identified a specific protein in the blood that appears to be present at higher levels in individuals […]
Website Revamp: Chronic Pain Partners – A New Look for EDS Awareness
We are thrilled to announce the launch of our newly revamped website at the same location, www.chronicpainpartners.com! As a nonprofit dedicated to raising awareness about Ehlers-Danlos Syndrome (EDS) and providing vital resources to the community, we have always strived to offer comprehensive support to patients, caregivers, and healthcare providers. With the recent website overhaul, we’re […]
