welcome to oneEDSvoice

- a positively charged Ehlers Danlos Syndrome community.
  • join today!
patient education

2017 EDS Global Learning Conference: Day 2 Wrap

From the sessions to the exhibit hall to the Zebra Ball, Day 2 of the Ehlers-Danlos Society Global Learning Conference was amazing and wonderful and exhausting. So, we hope you’ll excuse us our brevity today. (Read our Day 1 wrap and Day 3 wrap.)

The morning Hypermobile Plenary Session was jam-packed with information, here are a few highlights from each speaker:

Dr. Howard Levy (hEDS in Adults)

  • It’s important to find the right diagnosis rather than have the wrong diagnosis
  • If angry or concerned: ask yourself, do you need an “EDS” diagnosis, or a diagnosis?
  • If we have too many people with an EDS diagnosis who do not actually have it, the diagnosis itself will mean nothing.

Dr. Tony Kline (Hypermobility in Children)

  • Not only is the pediatric population and their diagnosis different from adults – but most children are different from each other as well.
  • Easier to see signs include skin hyperextensibility, papules, and scars
  • Less common signs are long arms, long fingers, pelvic floor, rectal or uterine prolapse
  • If a child shows Chiari type 1 or CCI, common in #EDS, should receive UPRIGHT MRI
  • Pain management is not well studied in pediatrics
  • If you receive a request to participate in an hEDS study – please do so we can continue the research and find the gene(s) involved.

Dr. Clair Francomano (Hypermobility Spectrum Disorders)

  • Referred to the research article, “A framework for the classification of joint hypermobility and related conditions
  • Aims of framework: summarize terminology, present different types of joint hypermobility
  • Consider the spectrum of secondary musculoskeletal manifestations and “range of pleiotropic manifestations”
  • Rationale for an evolution in thinking: nosology, management, research
  • Hope and pray it will help us in the research effort for identifying the underlying causes of hEDS

During lunch, Jason Parry, a physiotherapist and qualified pilates instructor from the Hospital of St John & St Elizabeth, gave a talk on Pacing, Managing Dislocations and Subluxations. The audience was privy to tips and tools such as, using the traffic light system to structure your day, and a sample schedule for pacing and managing your week. We’ll post our photos of these items after the conference, in the meantime, you can find them on our onevoice world Twitter feed Tweets from yesterday.

Jason Parry, Hospital of St John & St Elizabeth


Our oneEDSvoice booth was packed again, and it’s been a thrill for us to be able to meet so many incredible EDS’ers in-person AND online! (Remember, if you’re at #DazzleVegas, register and join oneEDSvoice.com for a chance to with our #EDS gift basket.) Click here for a video tour of the hall and exhibitors.

Last but not least, the Zebra Ball. Christina Bloom wow’d the audience with the “It’s Our Time” anthem. Plus, we are so pleased and proud of our own Victoria Graham, who won the Ehlers-Danlos Society’s Volunteer of the Year Award! Here’s the award video in case you couldn’t make it to the Zebra Ball.

If you want to virtually follow the conference, follow us on Twitter @onevoiceworld or on Facebook @onevoice.world and we will be posting all day, every day of the conference! You can also track the conference by following the hashtags #oneEDSvoice, #EDS, and #DazzleVegas. If you are here at the conference, please stop by the oneEDSvoice booth and say hello!


2017 EDS Global Learning Conference

What to Expect at the EDS Global Learning Conference

Day 1 Conference Wrap

Day 2 Conference Wrap

Day 3 Conference Wrap

expertly curated content related to this topic