Dealing with EDS
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 […]
Chronic Illness Apps: Why Use Them and Ones to Try for EDS Management
Why Use Technology in HealthMany of us wish there was an ‘all-in-one’ app 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 […]
Understanding the EDS Pain Maze
September is Pain Awareness Month—a time to shine a light on the silent journey of so many chronic pain sufferers. The unwavering type of pain that lasts for longer than six months called “chronic pain” can seem endless when you have Ehlers Danlos syndrome (EDS). It is likely the most common symptom so many of […]
Part 5: Healing the Hurt: How To Handle Clinician-Associated Trauma
Over the past several months, Chronic Pain Partners has published a series of articles about clinician-associated trauma based on the paper “Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes” by Colin M.E. Halverson, Heather L. Penwell, and Clair A. Francomano. The last four Chronic Pain Partners articles […]
Book Review of New EDS Book Symptomatic
The Ehlers-Danlos Syndromes (EDS) are complex and multifaceted conditions that have, for decades, challenged both patients and medical professionals alike. Over recent years, several books have been published on EDS. For instance, Dianna Jovin’s Disjointed and Christie Cox’s Holding It All Together, among many others. Recently, Symptomatic joined the list. Edited by EDS experts Dr. […]
Documentary Films on Ehlers-Danlos Syndrome
Over the last year, the Ehlers-Danlos Syndromes have been increasingly present in media. Several films have depicted different aspects of the lived experience of families with Ehlers-Danlos Syndromes and comorbid conditions around the globe. The following is a dynamic list of documentary films on EDS and its comorbid conditions based on the release date. Ehlers-Danlos […]
Top Ten Reasons EDS SUCKS!
The votes are in! One hundred and sixty-seven (167) of you responded to our survey about the things that SUCK about EDS. What made it into the top spot as the worst of all? Where did your dissatisfactions rank? Scroll down to find out! How we tallied the results: Each respondent received the same 19 […]
A New Way to Get Along with Fatigue: Set Up Your Personal Fatigue Scale
Did you know that fatigue is the second most commonly described symptom of hypermobility, after pain, according to the NHS and Cleveland Clinic websites? It’s something many of us with Ehlers-Danlos syndrome (EDS) share in common. But maybe if we could learn to pick up on the subtle signals sooner, we can learn to better […]
