EDS

Dr. Rodney Grahame and Jan Groh smiling together at the EDNF conference in Rhode Island in 2013, standing in a warmly lit conference hall. Dr. Grahame is wearing a light beige blazer over a blue striped shirt and brown trousers, while Jan Groh is wearing a patterned dress with a long scarf, glasses, and a wrist brace, holding a blue water bottle.

Remembering Beloved EDS Specialist Dr. Rodney Grahame (1932-2026)

On March 29, 2026, the EDS community lost one of our most beloved specialists and longtime champions of EDS, UK rheumatologist Dr. Rodney Grahame. He will be remembered as one of the earliest and most vocal advocates for EDS awareness.   I was first tipped off to the world of hypermobility at age 40 by my […]

Portrait of Karina Sturm with short hair looking slightly to the side, wearing a patterned top and a gold leaf-shaped earring, with a softly blurred indoor background.

A Thank You to Karina Sturm for Her Leadership at Chronic Pain Partners

We want to share our sincere thanks to Karina Sturm as she steps down from her role as Editor-in-Chief at Chronic Pain Partners. Karina’s drive and mission have always been deeply personal, shaped by her own journey with EDS and invisible disability. Since joining us in 2019, Karina has poured her heart and soul into […]

Graphic for the “EDS Unplugged” podcast episode titled “EDS & Movement Therapy, Support Aids.” The design features bold pink and black text on a light background, with cutout images of a woman exercising and using crutches. A large “4” indicates the episode number. A smiling portrait of Jeannie Di Bon appears on the right, with “sponsored by EDS Awareness” and the EDS Awareness logo included.

Episode 4: Movement Therapy and Support Aids with Jeannie Di Bon 

In this episode, Cassandra and Marcia are joined by Jeannie Di Bon, a movement therapist, educator, author, and founder of The Zebra Club. Jeannie Di Bon developed the Integral Movement Method, an evidence-based approach that integrates rehab, Pilates and nervous system regulation to help people move with less pain, as well as more control and confidence.    Listen to […]

Illustrated cover image titled “Our Team’s Favorite Go-To Support Aids for EDS/HSD,” featuring sketches of a recumbent bike, shoulder brace, Thera Cane massage tool, SmartCRUTCH forearm crutch, and a McKenzie neck roll pillow arranged across a white background.

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.

Physical therapist guiding a patient through a Schroth scoliosis exercise using stall bars, with hands-on cues to support posture and active muscle engagement during seated spinal elongation.

Schroth Therapy: An Expert Q&A on Scoliosis Care in EDS

Scoliosis and Ehlers-Danlos Syndrome (EDS) frequently go hand-in-hand. In this article, we cover the essentials of scoliosis and its prevalence in the EDS community. Next, we spotlight a highly regarded yet lesser-known approach for treating scoliosis called the Schroth Method. To help you decide if it is right for you, we caught up with Schroth-certified […]

Illustration of a young woman looking at her smartphone. She has red dotted circles highlighting different joints as she is screening for joint hypermobility with the new Hypermobility Assessment Tool app.

New App Can Help Screen for EDS

The Hypermobility Assessment Tool (HAT) app empowers patients who suspect they have EDS by putting the first steps of the screening process directly into their hands.

Illustration of a young woman with straight, shoulder-length hair, looking slightly to the side with a calm expression. She wears a plain T-shirt and a green lanyard around her neck decorated with yellow sunflowers. This lanyard is the Hidden Disabilities Sunflower lanyard used to signal her invisible disability, EDS.

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. 

Human body illustration with x-ray view showing the skeleton and organs, focused on the lower back area highlighted in red, suggesting pain. Next to this, there is a vertical row of emoji faces showing a range of emotions from sad and tense to dizzy, as well as two faces (one sad, one content) in the bottom left. Along the bottom, there's a large pain scale gauge with green, yellow, orange, and red zones. The needle is pointing toward the red section, indicating severe pain. The text reads

September is Pain Awareness Month

September is recognized internationally as Pain Awareness Month. (Look for hashtags #PainAwarenessMonth and #ThisIsPain on social media). Most types of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder unfortunately cause varying amounts of pain for most patients, so Chronic Pain Partners/EDS Awareness is joining the chorus to raise awareness. It’s in our name, after all!