Carolinas EDS, Chiari and More Support Group Meetings
“Meet n Greets” established August 2012
We will get a chance to meet others who “get it”
Our next meeting is:
Due to COVID-19, we will suspend monthly meet ups through the spring and revisit the idea for future meetings this summer.
For more event information, RSVP and up-to-date meet ups and events please visit and follow: https://www.eventbrite.com/o/carolinas-eds-chiari-amp-more-4189320393
“Experiencing a physical, mental or cognitive condition can make people feel like they are the only one going through it”
We are not a typical support group, that’s why we call it “Meet n Greets”. Currently we meet on the 2nd or 3rd Sat. of each month. Locations change regularly.
At the meet n greet we will share resources with each other and information to empower ourselves as patients, caregivers and family members living with Ehlers Danlos Syndrome (EDS), Chiari Malformation and/or related disorders like Intracranial Hypertension, Cranial Cervical Instability, Dysautonomia, Mast Cell Activation Disorders & more.
The idea is to raise awareness in our community and help others move through this journey for a positive life while provide a relief from overwhelming isolation associated with chronic illness.
Health professionals or those wishing to refer a health professional to speak during a monthly meeting, please contact me for available dates.
For more information about this group you can contact us via
Cell phone call or text:
“Its important to remember that even if someones experience is similar to your own, your outcome and needs may be entirely different”
“Seeing that there are so many people with my condition was a comfort, however,it can be overwhelming when so many are suffering and sharing their dooming stories”
“Giving medical advice is left to the medical professionals of each individual”
We understand that most of us do not like to plan ahead because we do not know how we are feeling at a particular day but try to plan your visit. We are encouraging you to come, you will love it!
Other ways to Connect with people affected by Ehlers-Danlos, Chiari and related disorders. Get support for pain, diet, GI issues, and more:
EDS of SC Facebook closed group:
Big EDS Facebook closed group:
Chiari Facebook open group:
EDS, Chiari, Dysautonomia, MCAS/MCAD/MMAS & more Facebook closed page (my fav):