Dealing with EDS
Seeing the Spine in Motion: Exploring the Potential Benefits of Upright MRI in EDS
This article explores whether upright MRI may be a useful tool for evaluating EDS-related spinal instability. Understanding the limitations of standard MRI and what positional imaging could offer instead, may help patients, clinicians, researchers, advocates, and healthcare providers better navigate the complex neurosurgical landscape of EDS. Why Supine MRI May Miss the Problem Cervical […]
Why a Sun Umbrella May Deserve a Spot in Your Dysautonomia Toolkit This Summer
If you are among the many people with Ehlers-Danlos syndrome (EDS) who also have dysautonomia, summer can feel less like a season to enjoy and more like something to survive. Research suggests that dysautonomia affects approximately 80% of people with hypermobile EDS, making it one of the most common comorbidities associated with the condition. For […]
My Ostomy Saved My Life
Celebrating My Two-Year Stoma-Versary I used to feel like I couldn’t say, “my ostomy bag saved my life,” because I didn’t get my ostomy bag for the same reasons a lot of people do. Some of the most common reasons people need ostomies are for inflammatory bowel disease (IBD), acute infections like diverticulitis, or colon […]
Beyond the Myths: Four People Talk About the Reality of Living With EDS & HSD
We wanted to end EDS Awareness Month by spotlighting the lived experiences of four individuals with Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD). Through these perspectives, we aimed to tackle a few of the many myths surrounding these conditions. We also wanted to offer a glimpse into the reality of living with EDS/HSD, including […]
Up Close and Personal: Our Team’s Favorite Go-To Support Aids for EDS/HSD
This month, we wanted to give you a peek into the daily lives of our team members by asking them to share a few of their favorite go-to supportive items for Ehlers-Danlos syndromes (EDS) or hypermobility spectrum disorders (HSD). While these aids might be what work for us personally, we hope they offer inspiration and ideas to help you live your life to the fullest with EDS/HSD.
Netflix’s Run Away Quietly Gets EDS Right: Ambulatory Wheelchair Use
Run Away, Netflix’s latest Harlan Coben adaptation, has many twists and turns. However, for the EDS community, the most meaningful revelation isn’t even a plot. It Is one of the first accurate depictions of an ambulatory wheelchair user. Run Away is a dark thriller/drama about Simon Greene, who is searching for his daughter Paige. With […]
The Silence After Survival
This week arrived like a storm we already knew by heart,yet somehow… it carried a different kind of wind. For years, they told us our pain was imagined,that our wounds were illusions,that our illnesses lived only in our minds.Those words carved scars we still carryscars that whisper warningseven when no danger is present. Three years […]
The Hidden Disabilities Sunflower Lanyard: Making the Invisible Visible
The Hidden Disabilities Sunflower lanyard can help patients with EDS signal to others that they may need extra understanding, support, or time in workplaces, shops, or other public spaces.
