MCAS
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.
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!
Research Round-Up, Edition Three
Welcome back to Research Round-up where we feature some of the latest developments in Ehlers-Danlos syndrome (EDS) research. Hitch up your horse, gather ‘round the campfire, and see what we have in store for you today. ICYMI: a possible blood test for hEDS? Cardiology“Longitudinal echocardiography in pediatric patients with hypermobile Ehlers-Danlos syndrome”Published in the American […]
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 […]
Researchers Found New Possible Causative Gene For HEDS: MIA3
Exciting news from Poland! Researchers from the Department of Clinical Genetics at Nicolaus Copernicus University in Torún, Poland, released a preprint of research that may hold the answers to the cause of hypermobile Ehlers-Danlos Syndrome (hEDS) for a part of the patient population. Specifically, Junkiert-Czarnecka et al. investigated the MIA3 gene in people with hEDS […]
Surgery Prep: Meeting Your EDS Hospital Stay Needs
How to be prepared & stay safe when having a hospital stay with Ehlers-Danlos syndrome (EDS) This article will give an overview of ways you can prepare for a hospital stay when you have EDS, as well as tips on surgical prep and your own patient advocacy. People with Ehlers-Danlos syndrome (EDS) often need surgery […]
Chronic Illness Advocate Brianne Benness about her EDS journey and #NEISVoid
For our November newsletter, journalist Karina Sturm interviewed Brianne Benness, the host of No End In Sight, a podcast about life with chronic illness and a chronically ill person’s journey to diagnosis. She is a co-founder of Stories We Don’t Tell, where she talks about hypermobility, mast cell disorders, and recontextualizing old experiences using new […]
