Wednesday, March 15th, 2017 is the day that the highly anticipated newly updated EDS diagnostic criteria will be released. The Ehlers-Danlos Society is holding a webinar in the morning at 9:30 am; however, it’s reached capacity. I will be listening in along with everyone else on the webinar. I was also graciously asked to help moderate a live Q&A session in the EDS Life Hacks group on Facebook at 4 pm EST on Wednesday afternoon. Our regularly scheduled “Just 5 Minutes” class will be held at 2:30 pm EST and then I will be live via video stream in the Life Hacks group for a Q&A at 4 pm. If you would like to join the EDS Life Hacks group and participate in their Q&A, please visit https://www.facebook.com/events/1815058988733134/.
If you aren’t a member of the EDS Life Hacks Group the link to join is https://www.facebook.com/groups/edslifehacks/. The goal of this Q&A is to help provide an interactive forum for people to feel comfortable about asking questions, and I will answer to the best of my ability. Please keep in mind that there’s a lot of information and many of our own physicians are still digesting some of the new information as well. The EDS Society has done a great job with this enormous project and is doing a ton of work to ensure that the updated EDS criteria are rolled out as best as possible — all for the purpose of decreasing time to proper diagnosis, increasing the quality of patient care and improving patient outcomes.
Additionally, please also understand that by no means is it our intent to give off the impression that I have all the answers, or that I understand the new criteria in its entirety – I will be listening Wednesday morning along with everyone else. However, I have read a number of the papers, and have a good understanding of the path that research on EDS has been going down for the past several years — in addition to my work and experience with the EDS community and in the medical field. I will do my best to provide insight, serve as a sounding board and help make sense of things that may or may be confusing.
Wednesday’s Q&A was put together by Kari, founder of the Life Hacks group & Ehlers-Danlos Tees, as a means to provide an immediate sounding board and provide support for group members and for our community as a whole. If you can’t make it, the Q&A will be recorded and posted, as will The EDS Society’s Webinar. After we see how things go and assess potential needs of our community, we can determine if there’s interest in more Q&As, or on specific topics. I’m sure there will be unanswered questions and I will be taking notes to make sure that I’m able to provide answers after our Q&A either through a post on EDS Wellness or in a way that links directly to the Q&A.
For those who are in the MD area, I will also be speaking at the EDS DC meeting on Sunday, March 19th along with Dr. Alan Pocinki. If you are interested in attending the support group meeting. To learn more, please go to http://edswellness.wpengine.com/learn-with-eds-wellness/
I hope to see everyone later this week during our “Just 5 Minutes” class, the Life Hacks Group Q&A, our Thursday Mind-Body Strategies class at The Mindfulness Center, or on Sunday at the DC EDS Support Group meeting.
– Kendra Neilsen Myles, Executive Director & Founder, EDS Wellness
Related information and resources:
- Update on the 2017 Ehlers-Danlos syndromes (EDS) International Classification – Updated EDS Nosology to be Released March 15th, 2017
- Ehlers-Danlos Society’s 2017 EDS International Classification – Your Questions Answered PDF
- ‘A Framework for the Classification of Joint Hypermobility and Related Conditions’ (2017) – http://hdl.handle.net/1854/LU-8510229