Managing Ehlers-Danlos
A New EDS Clinic Coming to a Town Near You (Via Telehealth)
Chronic Pain Partners is excited to speak with David Jameson Harris, a former McKinsey consultant, about his latest project, a new Ehlers-Danlos syndrome clinic, hopefully offering access to expert EDS care in several states starting in February 2024. CPP’s Karina Sturm spoke with David Jameson Harris about his new EDS clinic, his goals, and how […]
10 clever comebacks for handling offensive comments about hEDS
Living with a rare disease like hEDS (Hypermobile Ehlers-Danlos Syndrome) can lead to misunderstandings and sometimes offensive comments from people who don’t get it. However, handling these remarks with wit and wisdom can make the situation easier and lighten the load. Here are ten clever comebacks for handling offensive comments about hEDS: “You’re just lazy.” […]
Gut Check: Gluten Intolerance, Celiac Disease, or Mast Cell Reaction?
It is challenging to find the source of our gut problems, so many of us have related to hypermobility. The volunteer media team at Chronic Pain Partners tried to tackle the basics so our readers could have a brief introduction to the variances and testing available for different diagnoses of these often ‘gut-wrenching’ illnesses. Note: We […]
Toxic Positivity: Recognizing It and Preserving Your Spoons
When it comes to health crises, only a few diagnoses can be as daunting as Ehlers-Danlos syndrome (EDS). But you know what they say, “When life gives you lemons, make lemonade” – or, in this case, when life gives you chronic pain and mobility issues, make jokes (if you can)! Before we dive into the […]
Part One: EDS & Psychological Medical Trauma: An Introduction
[Content warning: trauma, PTSD, mental healthcare, negative clinician behavior, difficult medical encounters] Have you ever read something that left you speechless? I have so many thoughts and feelings about this article – ones that I can’t express with any sort of coherence at the time. What I can say: clinicians READ THIS (finger pointing down […]
New Netflix Documentary ‘Take Care of Maya’ Highlighting Wrongful Child Abuse Allegations
[CW: Suicide] Netflix has just released the highly anticipated documentary, “Take Care of Maya,” which unveils the heart-wrenching journey of the Kowalski family as they confront and challenge wrongful child abuse allegations. Directed by Henry Roosevelt, also known for his role in “The Social Network,” the documentary delves deep into the lives of the Kowalskis, […]
The First Steps of Medicine: Unraveling S.O.A.P. Notes from a First-Year Medical Student
Many of us can often feel like we are ‘professional patients’ managing our care as a seemingly never-ending full-time job of its own. But for a moment, try picturing yourself as a first-year medical student. What tactics can you imagine you might need to learn to keep the volumes of scientific and medical data organized […]
Bendy Bones and Stretchy Skin: An Ehlers-Danlos Book
In May, we published an article about a new children’s book about EDS, invisible illness, and disability–Bendy Bones and Stretchy Skin: An EDS Story. In this book, a young girl named Abigail struggles with her Ehlers-Danlos Syndrome and the effect it has on her life. Some of Abigail’s friends and classmates don’t understand why she […]
