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Does EDS Ever Make You Feel Like This?

Living with EDS: Developing an Effective Self-Management Strategy to Maximize Your Health and Quality of Life. Sabrina M. Neeley, PhD, MPH Department of Community Health Boonshoft School of Medicine Wright State University, Dayton OH. Does EDS Ever Make You Feel Like This?. What is Management?.

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Does EDS Ever Make You Feel Like This?

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  1. Living with EDS: Developing an Effective Self-Management Strategy to Maximize Your Health and Quality of Life Sabrina M. Neeley, PhD, MPHDepartment of Community HealthBoonshoft School of MedicineWright State University, Dayton OH

  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 GarrisonDon’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://www.sparkpeople.com • Stanford University School of Medicine. Chronic Disease Self-Management Program. http://patienteducation.stanford.edu/programs/cdsmp.html • World Health Organization. http://www.who.int/en/

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