2017 EDS Global Learning Conference: Day 3 Wrap | oneedsvoice
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welcome to oneEDSvoice
- a positively charged
Ehlers Danlos Syndrome community.
Please excuse that this wrap up is a few days late and a few dollars (not) short – Las Vegas was exhausting but good to me winning a whole $15. That being said, Day 3 was the final day of the 2017 Ehlers Danlos Society Global Learning Conference and an absolute whirlwind, in and of itself. To give you an idea, my day personally ended eating that delicious chocolate mousse dessert on the ground next to our booth – no shame, see below.
The day began with a morning plenary session from Dr. Adam Farmer on the Gastrointestinal Manifestations of hEDS and HSD. Here are some of my take aways:
The prevalence of abdominal pain, constipation, nausea, and gastroparesis is very common in people with hEDS and Joint Hypermobility Disorder (JHD). Thus, there is an increased risk for functional GI disorders in people with JHS, in general.
In people with EDS, dyspepsia is common. What is “dyspepsia”?
Dr. Farmer explains this a “full feeling in the tummy”
Did you know that there are more nerves in the gut than in the brain? There is something called a “Brain Gut Axis” that acts like a circuit that monitors gut function while linking the cognitive centers of the brain with intestinal functions
Dr. Farmer underlined the importance for a healthy Doctor-Patient relationship including:
A supportive multidisciplinary environment
Rationale for using specific treatment and agreement upon this treatment
Make sure that the goals you and your doctor are setting are achievable
Later in the day was an afternoon Plenary Session from Dr. Fraser Henderson on the Differential Diagnosis of Headaches in EDS. Many of the highlights include:
Questioning, “is this a chiari headache or a migraine… or neither?”
Some patients have Chiari symptoms but do not have Chiari. How? Many symptoms like occipital (towards the back and lower part of the skull) headaches, neck pain, pain exacerbated by coughing, bending, and straining can also point to craniocervical instability
Some patients may also have headaches that are a result low blood flow through the vessels of the brain due to thrombosis or stenosis
A pitfall is assuming that all headaches are from the head
In reality, we need to understand that headaches can be caused from the neck, specifically, cervical instability in EDS and JH patients.
Many clinicians fail to diagnosis ligamentous laxity and C1-C2 instability, thus, the patient is not receiving the proper diagnosis
Sometimes, cervical instability can only be seen on dynamic imaging. Dr. Henderson really stressed the importance of upright imaging!
During lunch, there was a very touching moment as the Junior Zebras performed a song that they wrote during a previous session with Christina Bloom. It can be quite difficult for “kids to be kids” when they struggle with battling EDS, but as they sang, “I’m different, I’m strong, I’m fearless, not wrong,” we begin to see that sometimes EDS can be a blessing in disguise as it gives us an insight to life that very few are able to achieve at such a young age.
With chills, tears, and a standing ovation after the kids’ performance, I will leave you with the message to always remain true to yourself. Remember that you are a zebra, unique in your own stripes, fearless, and strong.
I urge you to become a part of the oneEDSvoice.com community (if you have not already) to join in on our rareCourage discussions. These are your people – the ones who understand daily life, triumphs, struggles, and all! We, here at oneEDSvoice, are here to support you, provide resources, and give you the unique tools in order to live with EDS.