1. + Sabrina M. Neeley, PhD, MPH Department of Community Health Boonshoft School of Medicine Wright State University, Dayton OH Living with EDS: Developing an Effective Self- Management Strategy to Maximize Your Health and Quality of Life

2. + Does EDS Ever Make You Feel Like This?

3. + What is Management? “…the act of getting people together to accomplish desired goals and objectives using available resources efficiently and effectively” -Wikipedia

4. + Self-Management of Chronic Health Conditions Multidimensional Complex Holistic A path, not a destination Source: Lorig, et al. 2006. Living a Healthy Life with Chronic Conditions. Bull Publishing Company.

5. + Self-Management Tasks Take care of your condition Building a collaborative care team Keeping records Carry out normal activities Manage emotional changes Source: Lorig, et al. 2006. Living a Healthy Life with Chronic Conditions. Bull Publishing Company.

6. + Starting on the Path to Effective Self-Management Write out your goals and desires (SMART) List the hurdles - what, when, and how Have a plan Start a journal Begin where you are now Take one step at a time Learn from the setbacks Spend time "cleaning house" Stop comparing yourself to others Reward yourself Source: Sparkpeople.com

7. + Keys for Effective Self-Management Holistic health and wellness perspective Intrinsic motivation Self-efficacy Positive support system

8. + Source: World Health Organization

9. + Wellness Wellness is the dynamic process of becoming aware of, taking responsibility for, and making choices that directly contribute to one's well-being. Source: Medical Wellness Center, University of Miami

10. + Intrinsic Motivation Internal, rather than external Comes from me, not others Often goal-oriented, and reinforced by goal achievement Often diminished by increased extrinsic motivation Enjoyable, uplifting, energizing

11. + Self-Efficacy = Confidence Learning about EDS Knowing what questions to ask a doctor Making the most of your doctor visits Adjusting physical activities Adjusting diet Making accommodations to life activities

12. + Building and Maintaining an Effective Support System Family, friends, co-workers, neighbors, other EDS patients, medical and health professionals “Independence is being able to get other people to help you.” Communicate effectively Be specific in your requests Don’t be afraid to fire

13. + Julia Fox Garrison Don’t Leave Me This Way “HOPE IS A POWERFUL MOTIVATOR. Hope is always what gets you to the next goal; once achieved, there’s a goal after that. Anyone who tries to kill the hope in your heart is the one you have to be prepared to battle.” “YOU OWN YOUR CONDITION – and you are generously sharing it with everyone close to you.” “We’re only victims if we choose to let ourselves be consumed by something. I’m a survivor who continues to thrive.”

14. + If not now, when?

15. + Questions?

16. + References Lorig, et al. 2006. Living a Healthy Life with Chronic Conditions. Bull Publishing Company. Medical Wellness Center, University of Miami. http://wellness.med.miami.edu/ http://wellness.med.miami.edu/ http://www.sparkpeople.com Stanford University School of Medicine. Chronic Disease Self- Management Program. http://patienteducation.stanford.edu/programs/cdsmp.html http://patienteducation.stanford.edu/programs/cdsmp.html World Health Organization. http://www.who.int/en/http://www.who.int/en/