"Type 1 or 2: The Pain of Being Typecast Diabetic" by Cheryl Farrell  June 2007   Actors hate being typecast. So do people with diabetes.   Understanding the difference between the two main forms of the disease is critically important given the skyrocketing incidence of diabetes in many communities, and its growing impact on the nation’s healthcare system. While the nation will focus on these issues during National Diabetes Alert Day, it’s important to remember that diabetes is a disease that lasts all year, every year, until there is a cure.    Type 1 (or juvenile) diabetes is an extremely serious autoimmune disease in which the pancreas stops producing insulin, a life-sustaining hormone that allows us to get energy from food. The condition requires patients to vigilantly monitor their blood sugar levels and inject insulin throughout the day, every day, just to stay alive. Type 2, also known as adult onset diabetes, is the more familiar version and is closely linked to lifestyle choices and family history.   Children with type 1 carry a special burden. They must count their carbohydrates at every meal to properly determine insulin dosing levels—factoring in time of day, stress and exercise into their calculations. The physical pain of daily injections is compounded by the emotional pain of having to defend themselves against myths and the improper stigma of being sick by lifestyle choices. This happens when people improperly assume they brought the disease upon themselves by eating “too much” sugar and neglecting exercise.   Unwittingly, some type 2 diabetes awareness advocates raise the potential for misdiagnosis of type 1 diabetes. A recurring public service announcement in California shows children facetiously asking for type 2 diabetes complications in the same manner they would request sugary treats. Although an important warning, the message leaves an information vacuum about children with type 1 diabetes. To be clear, no individual’s behavior causes type 1 diabetes.   My sixteen-year-old son Alec was diagnosed with type 1 diabetes five years ago. His father and I have a long history of checking with pediatricians for the mildest of symptoms. Our hyper-attentive parenting paid off because his diagnosis came before he developed serious complications. Nevertheless, Alec’s diagnosis caught us by surprise. We did not know about the disease and it does not “run in the family,” as we are often asked. We did not know the symptoms—we just knew something was not right. [See side box for warning signs of type 1 diabetes.]   I noticed my son’s rapid weight loss and constant thirst. I travel for work and I naively thought he was reacting to my being away. These days living with the disease, my son enjoys lacrosse and wrestling. However, he manages a complex set of calculations many times a day. He factors in carbohydrates in his meals, exercise, how long he sleeps, how he feels, and other considerations to stay alive. While treatment varies, my son’s daily routine is to test his blood sugar (glucose levels) six to seven times a day in addition to taking insulin throughout the day. For parents of young children, this regimen often includes multiple visits through the night—every night—to test and to supply insulin.   Sadly, even trained professionals may overlook or misdiagnose type 1 symptoms. The Cash family of Culver City can attest to heart-wrenching consequences of misdiagnosis. Despite repeated pediatrician visits in 2003, the Cash’s then 15-month-old son Aidan had symptoms that were improperly assessed. He experienced weight loss, excessive urination (soaked diapers), extreme thirst, loss of appetite, body rashes and labored breathing.   The family had no reason to doubt the accuracy of diagnoses that included Respiratory Syncycial Virus (RSV) and asthma. Their confidence changed sixteen hours after a third office visit when Aidan became unresponsive, “as if in comma land,” according to Pepper, his mother. Rushed to the hospital by paramedics, Aidan was severely dehydrated and in critical condition. There, a simple urine test provided a diagnosis of type 1 diabetes. Now five years old, Aidan “looks like an ordinary kid.” The family has learned to manage the disease and they are researching kindergartens with nurses. Pepper Cash believes “type 1 symptoms should be posted in every pediatrician’s office. No one should go through what we did.”   The Juvenile Diabetes Research Foundation (JDRF) reminds us that insulin is not a cure. My family, along with millions of other parents and impassioned advocates, support research to find a cure for diabetes. In the meantime, it is important to know the symptoms for our children, relatives, neighbors, and friends.     Cheryl Farrell is a volunteer for JDRF.  The mission of JDRF is to find a cure for diabetes and its complications through the support of research. Visit www.jdrf.org for more information and to find a chapter near you. Also, visit www.bayheartmusic.com to order the CD “Promise to Remember Me,” recorded by Cheryl Farrell on behalf of JDRF.     Warning Signs Type 1 Diabetes* If your child exhibits one or more of these symptoms, call a doctor immediately. Education about the symptoms of type 1 diabetes is critical because it can easily be mistaken for more common illnesses. Warning signs of type 1 diabetes (these may occur suddenly):          Extreme thirst          Heavy, labored breathing          Sudden weight loss or increased appetite          Sudden vision changes          Frequent urination          Stupor, unconsciousness          Drowsiness, lethargy          Fruity, sweet, or wine-like odor on breath * Source: www.jdrf.org. JDRF has printed Warning Signs cards, with the symptoms and treatments of type 1 diabetes and hypoglycemia (low blood sugar), available upon request.      JDRF Facts   More than 20 million Americans live with diabetes. About 1.3 million new cases of diabetes are diagnosed every year. Up to 3 million Americans live with type 1, the more severe form of the disease. There are 35 children a day diagnosed—essentially a classroom a day of new cases. Diabetes can have devastating complications such as kidney failure, blindness, amputations and death. JDRF was founded in 1970 by the parents of children with type 1 diabetes. JDRF is the leading charitable funder and advocate of type 1 diabetes research worldwide and has provided more than $900 million for diabetes research since its inception.

A JDRF Gala and Oliver’s Story by Cheryl Farrell April 2007   Here are a few facts about Oliver Roman. He’s a sensitive, soft-spoken 11-year-old with a bright smile. He’s fascinated with cars and basketball. He has caring friends and is a good student. He and his family enjoy adventurous vacations together. They frequent Winter X Games in Aspen and ride motor bikes. Oliver scuba dives in Hawaii. Oliver has type 1 diabetes.   It was during an October 2005 family vacation in Hawaii that Oliver’s symptoms became apparent. His father Joel, a William Morris Music VP, noticed that his son “wasn’t feeling one hundred percent.” Weeks prior, Oliver’s weight dropped about 10 pounds. His dad thought it was typical of his son’s growth history—a slender child with a tendency to grow in spurts. However, the loss of appetite was accompanied by constant thirst and urination, frequent naps, and fruity smelling breath. In hindsight, Joel sees these as clear warning signs.   Returning from vacation, Oliver was literally carried into the doctor’s office because he was so weak. His pediatrician diagnosed the flu and suggested Oliver be brought back in a week if the symptoms persisted. It didn’t take a week. The next morning Oliver “couldn’t get out of bed,” according to Joel.   Oliver was again carried to the doctor’s office, but this time, the physician’s partner was on call. This doctor was immediately suspect of Oliver’s symptoms because her spouse has type 1 diabetes. She quickly ran a blood test to confirm her suspicions. With a glucose level of 480 (normal is in the low 100’s), Oliver was rushed to the emergency room and stayed in the Intensive Care Unit for four days.   Often confused with adult onset diabetes (or type 2), type 1 diabetes is an autoimmune disease which strikes children suddenly. It is not triggered by obesity, as is often the case with the more commonly known version. Type 1 requires multiple injections of insulin daily or a continuous infusion of insulin through a pump.    Joel “co-parents” Oliver with his mother, Tami. With shared custody, both parents support their son in their own way, according to Joel. As a single dad with a demanding schedule, and Oliver’s health challenges, his life can be extremely complicated. He makes it work with the help of an extended family and his employer. Here’s what Joel has to say about his life's juggling act and his willingness to do it.   Farrell: What was life like shortly after Oliver was diagnosed?   Roman: At the hospital, we were set up with a nutritionist and other specialists. At first things were overwhelming and frightening—a scary place to be. JDRF [Juvenile Diabetes Research Foundation] outreach was helpful, but you don’t know what questions to ask or where you need help. Media images of diabetes didn’t help me know what to look for. It took a beat to adjust, but we did.   Farrell: Who is in your support network, and how do they help Oliver these days?   Roman: It takes all of us—Oliver’s mother, grandparents, his sister Emily, even his teachers—to make sense of the numbers and calculations. We all had to learn what signs to look for if Oliver got into trouble [with his glucose readings]. I supervise his injections when he’s at home with me. His sister is fourteen and she helps during the in-between hours after school. His grandparents provide back-up for glucose testing throughout the day. Thanks to technology, if I have to be out of the office with Oliver, I can stay in touch with my clients and associates. They understand the priority I have for my children.   Farrell: How is Oliver doing fifteen months into this new way of life?   Roman: Oliver doesn’t tend to sneak foods—if he does, he doesn’t feel good. He’s aware of what he needs to do. At first it was an issue, but now he sees it as normal for his life. For now he’s on injections, but we are planning to go on the [insulin] pump this summer.   Farrell: What about sleepovers and his friends?   Roman: Sleepovers can be tricky—he gets an injection at 9PM and again at 7:30AM, so we have to work around that. It should be easier with the pump.  As for Oliver’s friends, they are aware, but don’t really notice his diabetes unless he’s testing or getting a shot. They say, “That’s just Oliver and what he has to do.”  Oliver is proud to show how he tests his blood levels and explains what he has to do and what it all means.   Farrell: How did Oliver’s diagnosis shift your priorities?   Roman: My priority has always been my children—type 1 did not create that priority. Now the focus is on how things are done. There are lots of horrible diseases, but this one is manageable. I’m amazed at how diabetes defines who children become—it defines their character and how they choose healthier choices. I believe in allowing kids to be kids and at the same time, hold on to their health. There was a shift in the time I gave to certain charities. Before Oliver’s diagnosis, I was active with the City of Hope, Race to Cure MS, and the Dream Foundation. While I still support them, my primary focus is now on JDRF.   Farrell: Given your life these days, what advice would you give to protégées about setting priorities?   Roman: It’s the same as before Oliver’s diagnosis: life can change in a moment.   Farrell: Pardon me while I channel Barbara Walters, but if you could grant one wish for Oliver, what would it be?   Roman: Oliver once said how sorry he was that I always had to test [his blood levels] and do so much for him. I told him, “Your mother and I feel honored to be the people to care for you.”  It’s a privilege to participate in the day-to-day management of his health. My wish for both of my children is long and healthy lives. They are not mutually exclusive.  Type 1 is what it is—I tell Oliver to take his and own it.   ________________     The Roman family and millions of others deal with type 1 diabetes with courage, resilience, and faith that a cure will be found soon. Insulin is not a cure. The JDRF holds an annual gala to raise funds for research to finding a cure. (See box.)                                          2007 GalaTribute Finding A Cure: A Love Story   The Juvenile Diabetes Research Foundation (JDRF) will hold its fourth annual Gala Tribute at the Beverly Hilton Hotel on May 24, 2007. The JDRF Los Angeles Chapter honors special people doing remarkable deeds in addition to raising significant funds for stem cell research. In the past three years, honorees were Former First Lady, Nancy Reagan, Barbara Davis, Dana Reeve and Garth Brooks, with participants Robin Williams, Dustin Hoffman, Michael J. Fox and Trisha Yearwood.   The 2007 Angel Award recipient will be Mr. George Schlatter for his leadership in the entertainment industry and for his ongoing support of JDRF. Mrs. Natalie and Mr. Paul Ofalea will be honored as Caregiver Recipients for their work through the Orfalea Family Foundation that has helped so many children in the areas of health and education.    Please plan to attend this important event and help to make the promise of stem cell research a reality. For more information, call the JDRF Los Angeles: 213-233-9901.