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Sabrina M. Neeley, PhD, MPHDepartment of Community Health

Boonshoft School of MedicineWright State University, Dayton OH

Living with EDS: Developing an Effective Self-Management Strategy to

Maximize Your Health and Quality

of Life

+ Does EDS Ever Make You Feel Like This?

+ What is Management?“…the act of getting people

together to accomplish desired goals and objectives using

available resources efficiently and effectively”

-Wikipedia

+Self-Management of Chronic Health Conditions

MultidimensionalComplexHolisticA path, not a destination

Source: Lorig, et al. 2006. Living a Healthy Life with Chronic Conditions. Bull Publishing Company.

+ Self-Management TasksTake care of your condition

Building a collaborative care team

Keeping recordsCarry out normal activitiesManage emotional changes

Source: Lorig, et al. 2006. Living a Healthy Life with Chronic Conditions. Bull Publishing Company.

+ 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

+ Keys for Effective Self-Management

Holistic health and wellness perspective

Intrinsic motivationSelf-efficacyPositive support system

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Source: World Health Organization

+ WellnessWellness 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

+ Intrinsic MotivationInternal, rather than externalComes from me, not othersOften goal-oriented, and reinforced by goal achievement

Often diminished by increased extrinsic motivation

Enjoyable, uplifting, energizing

+ Self-Efficacy = ConfidenceLearning about EDSKnowing what questions to ask a doctor

Making the most of your doctor visitsAdjusting physical activitiesAdjusting dietMaking accommodations to life activities

+ 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 effectivelyBe specific in your requestsDon’t be afraid to fire

+ 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.”

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If not now, when?

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Questions?

+ 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/