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

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Joanna Southerland
Tallahassee, FL

My son, Phil, was diagnosed with juvenile diabetes at 7 months of age. He would have died (after having been misdiagnosed for one week) had I not taken him to the emergency room and raised hell. (Be your own or your child's advocate which is the first line of defense in facing chronic illness).

Phil is now almost twenty. He is my idol. I have often said he should be a poster child for diabetics as he is the picture of health and has almost perfect control. Not once has he ever complained about his disease -- but like a PBS kid said in an ad, Phil just "keeps on keepin' on." He has had an absentee father -- who cancelled his health insurance, has refused to help buy his son's medical supplies (fortunately, I have been able to pick him up on my insurance), and doesn't help at all with college.

But that has never dampened Phil's spirit. He overcomes. He was and is a superb athlete. As he grew older, he gravitated towards sports where he was in control -- as many coaches would pat him on the head, feel sorry for him, and never play him because he was "sick," in their eyes. Phil is now a top cyclist in the southeast and races for the University of Georgia and Zaxby's pro team. He has placed in the top ten in several national races. This has taken a lot of insulin shots (over 30,000 lifetime), finger sticks, and "almost seizures" to be able to race 100 miles in a day, not to mention guts and determination.

Chronic illness has not ever held him back until now. We are faced with the reality of college tuition. A normal kid could take a year off, work, get state residency, then get in-state tuition -- or take year off just to earn money. Not Phil, as he cannot be without health insurance. So for the first time in his life he is facing an obstacle that cannot be readily overcome. He is facing this because he is discriminated against due to a disease, a bad gene pool, whatever. He cannot act normal -- everything has got to be planned around "having diabetes." Any other kid could live away from mom and dad and not have to worry about insurance. Or they could get the university health insurance. But if you have a preexisting condition, a student is not entitled to the "college health" plans.

Many times we heard from the doctors, "He can lead a normal life." Those words equal the biggest lie anyone can tell a person with a chronic illness. The same doctor who made that statement charged more for his doctor visits for my diabetic son than for my normal son even thought they had the exact same treatment because my son had a "disease." There is no "normal" life for anyone with a chronic illness. Do I wish my son had had the luxury of a disease-free life? I would give anything for him to be diabetes-free. But in the whole wide world of living, he is a wonderful son, doting older brother, and an empathetic human being who faces and overcomes challenges without complaint. There are many times I have wished I could be like him.

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

Jose Pedro Greer, Physician
W.F. Nagle, Physician
Ronda Riebman, Exercise
Cathleen Schilling, Case Manager
Jim Sykes

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