The Community Voice: Personal Perspectives on and Responses to Diabetes Carolyn Alexander

1. The Community Voice: Personal Perspectives on and Responses to Diabetes Carolyn Alexander Diabetes: Inside-Support Tel: 410-581-9577 Email: Alexanderc7@gmail.com June 2008 eHealth Conference HBCUs & Community Partners

2. 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.

3. 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

4. Diabetes: Facts & Data Diabetes is a group of diseases marked by high levels of blood glucose resulting from defects in insulin production, insulin action, or both. Diabetes can 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

5. Diabetes: Facts & Data • 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

6. Diabetes: Facts & Data Frank Vinicor, MD, MPH, Director of the Division of Diabetes Translation at the Center 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

7. 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

8. Diabetes: Confronting the Disease • Medical providers attempt to minimize complications and disability • Diabetics implement lifestyle changes to minimize complications – critical tasks

9. Diabetes: Confronting the Disease Diabetic’s Critical Tasks • Introspection • Health and Financial Literacy • Preparation • Follow-up

10. Diabetes: Confronting the Disease 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

11. Diabetes: Confronting the Disease Diabetic’s Critical Tasks • 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…

12. Diabetes: Confronting the Disease Diabetic’s Critical Tasks • …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)

13. Diabetes: Confronting the Disease 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 for a renewed perspective on life that enables lifestyle adjustments to reduce complications

14. 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

15. Diabetes: Inside-SupportAddress Real-Life Concerns Objectives • Provide a platform where people share concerns, effective forms of coping, mutual coaching • Promote use of technology to explore practical responses and solutions

16. Diabetes: Inside-SupportAddress Real-Life Concerns Objectives • Work with diabetic to identify personal barriers to improving health • Help diabetic develop strategies to overcome these barriers and practice applying them • Seek, consult, collaborate with medical providers, governmental agencies, non-profit organizations, private-sector, psychologists, and spiritual leaders for professional guidance

17. 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 Diabetes: Inside-SupportOur Real-Life Concerns

18. Diabetes: Inside-SupportAddress Real-Life Concerns A Response for the Community • Are you interested in learning more about Diabetes: Inside-Support? • How would you like to participate? • How can Diabetes: Inside-Support serve you best? • Who would you invite to participate? Please direct recommendations and comments to: Carolyn Alexander 410-581-9577 Alexanderc7@gmail.com

19. “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: Alexanderc7@gmail.com

20. 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