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WHO CARES: Chronic Illness in America
WHO CARES: Chronic Illness in America

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Betty Bennett
Poulsbo, WA


Many, many of my family members and I have lived and some have died from Polycystic Kidney Disease [PKD]. We, along with 600,000 other Americans and over 12.6 million worldwide, have struggled to get a medical community to become aware of this disease and understand it's manifestations. Most doctors know little about it and even kidney doctors are often overwhelmed in knowing how to treat the patient effectively. I am a RN but still find I have a difficult time walking that fine line of not offending some doctor/nurse's ego while still trying to get appropriate help. My sisters have been on kidney dialysis for 11 and 13 years now. They both live the most productive lives they can and tolerate a great deal of inconvenience and challenges in their lives but it is amazing how inconsiderate some medical personnel can be when they finally can't take the pain and have to go to the emergency room. Long-term pain and suffering can make even a small extra pain too much to bear! At the same time, a little extra kindness, such as a warmed blanket, is worth gold! We need to all be more aware that unless we walk in someone else's shoes, we can't tell what is happening for them that moment! For more information, pkdcure.org is the PKD Foundation's web page.

YOUR STORIES
Zoe Albright, Stroke
Betty Bennett, Kidney Disease
Roxanne Bedford-Curbow, Seizures
Valerie Brekke, Fibromyalgia
Lily Casura, Chronic Fatigue
Billie Davis, Peripheral Neuropathy
Penny Day, Chronic Obstructive Pulmonary Disease
Julia DeJesus, Seizure Disorder
MS Patient, Fairfax, VA
Charisse Farmer, Hydrocephalus
Katherine Fielder, Chronic Pain
Zoe Francis, Juvenile Diabetes
James Hines, Hemochromatosis
William Holford, Emphysema
Nancy K, Chronic Fatigue Syndrome
Patricia Lawson, Natural Rubber Latex Allergy
James Locke, Crohn's Disease
Gary Maslow, various
Kathy Matthews, Parkinson's
Andrea Meyer, MS
Gina Owens, Chronic Fatigue Immune Dysfunction Syndrome
Alicia Salas, Chronic Pain
Allison Scott, Chronic Pain
Deborah Serrano, Stroke
Becky Shively, Phenylketonuria
Jennifer Smallin, Type I Diabetes
Joanna Southerland, Diabetes
Alina Valdes, Cystic Fibrosis
Elizabeth Wertz, Seizures

WHAT WOULD YOU DO?
Jose Pedro Greer, Physician
W.F. Nagle, Physician
Ronda Riebman, Exercise
Cathleen Schilling, Case Manager
Jim Sykes

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