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Tips from #DazzleVegas for Those Newly Diagnosed with Ehlers Danlos Syndrome

On Day 1 of the 2017 Ehlers-Danlos Society Global Learning Conference in Las Vegas, Volunteer Patient Advocate, Maggie Buckley, held a discussion group for newly diagnosed patients and first-time conference attendees. This was my personal favorite session that day, and despite being neither of the two, I learned a plethora of tips and information which I’m sharing with you below! (Day 1 highlights) (Day 2 highlights)


Be your own superhero

When you are first diagnosed, you go through a series of emotions that begin with relief and end with a state of shock. During this time, Maggie highlighted the importance of learning about your body, including anatomy, medical terminology, and how EDS manifests in your own body. You often have to be your own superhero. This including advocating for yourself and learning the limits (and vast capabilities) of your own body.


Maintain muscle tone

Muscle tone was also highlighted as being a key aspect of maintaining a “healthy” EDS body. Whether you are able to walk 5 minute or 5 miles, keeping active and moving is key. Attendees from the crowd also added in that keeping good neck posture is extremely important and that Kevin Muldowney‘s book (Amazon) can be beneficial to learn from, as well.


Find a good support group

Emphasized was the importance of finding a good support group. Support groups can come in many forms: online support groups, formal groups moderated by a social worker, educational groups who meet regularly, and casual groups. Who knew there were so many! Never be afraid to ask for help – these are your people and we understand the difficulties you may face.


Always have an emergency information sheet

Last, but probably the best tip I learned, is to keep an emergency information sheet on you at all times. This sheet includes:
– Diagnoses
– Date of Diagnoses
– Treatments that have worked for you
– Medications
Keep this sheet in your bag, in the car, and on your refrigerator. This blew my mind but I actually learned that EMTs are trained to look on the refrigerator for important information. Place this emergency information sheet on the refrigerator, included with your name and a photo – just in case.


Register and login to oneEDSvoice to share your tips on our rareCourage community wall.