the community voice: personal perspectives on and responses to diabetes carolyn alexander

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The Community Voice: Personal Perspectives on and Responses to Diabetes

Carolyn AlexanderDiabetes: Inside-Support

Tel: 410-581-9577 Email: [email protected]

June 2008 eHealth Conference HBCUs & Community Partners

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Introduction

I am excited to be here because this year’s conference theme emphasizes how we can take personal responsibility / a more active role for our own healthcare

It emphasizes action I took to improve my health, to ensure access to care, to ensure I was prepared to make informed decisions…You see, as a recipient of pancreas/kidney transplantation less than a year ago, using online resources proved to be an invaluable educational tool that made the difference in the medical decisions I made

This 2008 eHealth Conference theme reflects our need to not only

be peripherally aware of change in ourselves, in our communities, in the marketplace, in the world, but it is in sync with the shift we are witnessing in every area of life including a shift in how we manage our health.

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Overview

Share my perspective on diabetes which reflects 38 years of living with this dis-ease of the body

Discuss why Support that addresses diabetic’s

real–life concerns is critical to diabetic’s ability and motivation to improve self-management

Request that you consider Diabetes: Inside-Support as a Response to diabetic’s need for Support

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Diabetes: Facts & Data

Diabetes is a group of diseases marked by highlevels of blood glucose resulting from defects in insulin production, insulin action, or both. Diabetescan lead to serious complications and premature death but people with diabetes can take steps to control the disease and lower the risk of complications.

CDC Diabetes National Diabetes Fact Sheet United States, 2005

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2006 CDC data shows that 7% of the US population or 20.8 million Americans have diabetes

Type 2 represents 95% of all cases

About 6 million currently affected do not know they have the disease

DOC News January 1, 2006 Vol. 3 Number 1 p.1 2006 American Diabetes Association

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Frank Vinicor, MD, MPH, Director of the Division of Diabetes Translation at theCenter for Disease Control and Prevention in Atlanta, says:

Every 24 hours, 4,100 new diabetes cases are diagnosed in the US

At least 810 people die

230 undergo amputations

120 learn they need kidney dialysis or transplant 55 go blind

An additional 41 million people estimated to have pre-diabetes

DOC News January 1, 2006 Vol. 3 Number 1 p.1 2006 American Diabetes Association

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Diabetes: Personal Perspective

Type 1 Diabetic, diagnosed age 12, 33 years insulin injections, 4 years insulin pump use, 1 year peritoneal dialysis, <1 year pancreas/kidney transplant

Diagnoses – brittle diabetic, low-sugar episodes, ketoacidosis, comas, diabetes retinopathy, kidney failure, diabetic neuropathies

Medical providers include:

Endocrinologists, Nephrologists, Neuro-Opthalmologist, Cardiologist, Vascular Surgeons, Podiatrist

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Diabetes: Confronting the Disease

Medical providers attempt to minimize complications and disability

Diabetics implement lifestyle changes to minimize complications – critical tasks

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Diabetic’s Critical Tasks

Introspection Health and Financial Literacy Preparation Follow-up

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Diabetic’s Critical Tasks Introspection - examine thoughts and feelings about

the disease and how it is effecting ones life; consider long-term implications of disease; identify personal and social barriers affecting self-management

Health and Financial Literacy – Take initiative to use online resources to obtain, process, and understand basic information and services needed to make appropriate health and financial decisions; learn to interpret/understand ones blood test results; understand health insurance plan or the lack of

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Preparation - Manage personal affairs and medical matters to reduce the impact of problems and to quicken ones ability to arrive at solution

Follow-up - adhere to appointment schedules and medication regimens; develop questions to discuss with providers; keep a copy of ones blood lab reports and ensure medical provider has most recent results…

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• …plus, take on all the demands of life, family, home, job responsibilities, career, relationships

make life changing medical decisions

(when others are not aware of the nuance of managing the condition)

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Diabetic’s Need for Support

Adults with juvenile-onset or adult-onset, teens and young-adults, parents of children with juvenile-onset need Support to do it all!

Pamphlets and booklets received during medical appointments provide good information, but not sufficient to help me align my desires and will fora renewed perspective on life that enables lifestyle adjustments to reduce complications

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Diabetes: Inside-SupportAddress Real-Life Concerns

Aim / Purpose Serve as a bridge between diabetic’s formal

healthcare and self-management

Address the diabetic’s real-life barriers to improve self-management; left unaddressed, these real-life issues promote complications

Help participants meet self-management demands, gain greater confidence and control

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Objectives

1. Provide a platform where people share concerns, effective forms of coping, mutual coaching

2. Promote use of technology to explore practical responses and solutions

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Objectives

3. Work with diabetic to identify personal barriers to improving health

4. Help diabetic develop strategies to overcome these barriers and practice applying them

5. Seek, consult, collaborate with medical providers, governmental agencies, non-profit organizations, private-sector, psychologists, and spiritual leaders for professional guidance

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Diabetes: Inside-Support Our Real-Life Concerns

Balancing blood glucose Eating Habits vs. Nutrition Overweight or Obese Health Literacy Health Insurance Medicare From Complications to

Disability Financial Literacy Impact on Family Social Relationships

Emergency Preparedness Debilitating Stress Effects of High-Sugar

Levels Effects and Dangers of

Low-Sugar Episodes Diabetes at the Workplace

and at School Understanding Lab Reports Using Technology to

Improve Outcomes

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Diabetes: Inside-Support Address Real-Life Concerns

A Response for the Community

1. Are you interested in learning more about Diabetes: Inside-Support?

2. How would you like to participate? 3. How can Diabetes: Inside-Support serve

you best?4. Who would you invite to participate?

Please direct recommendations and comments to:Carolyn Alexander 410-581-9577 [email protected]

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“The diabetes experience is not one to despise, but one I

position myself to maintain balance for life.”

Carolyn Alexander

Diabetes: Inside-Support

Tel: 410-581-9577

Email: [email protected]

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No discipline seems pleasant at the time, but

painful. Later on, however, it produces a harvest

of righteousness and peace for those who have

been trained by it.

Hebrews 12:11 NIV

the community voice: personal perspectives on and responses to diabetes carolyn alexander

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