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Persistent
Many timesI have been called resilient. A title inflicted on melike a brilliant,gleaming badge of honor. But it was one that I never asked for.Worn without choiceor the ability to claima different perspective,a different name. I give myself a new description,a title that encompassesthe pain and infliction. I am persistent. Resilience is to bendand not […]
Horizontal Parenting: 5 Strategies I Used After Surgery as a Disabled Single Mom
I live with Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), mast cell activation syndrome (MCAS), and Sjogren’s. Over the years, I’ve undergone more than 40 surgeries, including spinal fusions and brain surgery, many performed while raising my son alone. My son was born 11 weeks early and spent 63 days in the NICU. We […]
Why May is The Moment for “Complicated”
We didn’t plan it this way, but the release of our documentary film, Complicated, on Apple TV in May feels almost fated. Between Ehlers-Danlos Syndrome (EDS) Awareness Month and Mother’s Day, the timing reflects the very heart of this project that we started nine years ago. To see it come to fruition has been incredible, and I […]
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 […]
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.
Measuring the Unmeasured
What Two New Studies Say About the Head, Neck, and hEDS People with Ehlers-Danlos syndrome have heard for years that their symptoms are “in their head.” In one sense, that may be true—but not in the way we all hate to hear. When it comes to symptoms like headaches, nausea, dizziness, brain fog, visual disturbances, […]
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 […]
A Cheerful Gift Guide for People with EDS, Chronic Pain, Chronic Illness, Disability, and Those Who Love Them: Chronic Pain Partners’ 2025 Gift Guide
Shopping for someone with chronic illness or chronic pain can feel weirdly high stakes.Should you get something comforting?Something fun?Something practical?Something that has nothing to do with their medical life at all? The answer: Yes to all of that. This guide mixes comfort items, purely-for-fun treats, and practical helpers that can make life a little easier. […]
