The Challenge of Living with Type 1 Diabetes
12:41 PM June 20, 2011
Two years ago, my son Ben was diagnosed with type 1 diabetes. For days after the diagnosis, I anchored the KTLA Morning News and then retired to my office where I closed the door and wept. I was grieving the loss of the carefree life my son and every 12-year-old boy should enjoy. I was terrified about the life-threatening disease he now faced. I was mad. We were good parents who had done everything we could to make sure our child was healthy and thriving. We made him eat healthy foods. We made sure he exercised and was fit. We took him to the doctor for physicals and other regular check ups. When he was born healthy, the doctor told us he had 10 fingers and 10 toes and everything was where it was supposed to be. How could doctors now come to us and say that our precious son actually faced a life-threatening disease?
Thankfully, our son's type 1 diabetes was discovered during a routine physical and not during an emergency hospitalization. Some families have to rush their children to the hospital in an ambulance when blood sugar levels go so high that their children suffer seizures or fall unconscious. Like many of them, we had no experience with diabetes and didn't know anything about it. We would soon learn that our son's life and our family's life was about to change in a big way.
One day Ben was a healthy, athletic and happy 12-year-old boy. The next day he was learning how to check his blood sugars and how to inject himself with a syringe. Two years later, Ben is an experienced young man who deals with the challenge of type 1 diabetes with aplomb. Several times a day, Ben has to prick his finger with a needle to make himself bleed. He does this to check his blood sugars. Before he eats or drinks anything, he has to estimate the number of carbohydrate grams in a meal or snack to determine how much insulin he has to either inject through a syringe or put in to his body through an insulin pump. If he does the math correctly and puts in the right amount of insulin, he simply continues about his day. If he gets it wrong and doesn't use enough insulin, his blood sugars can spike to dangerous levels--contributing to the long-term effects of diabetes which include kidney failure, blindness, nerve damage, amputation, heart attack and stroke. If he uses too much insulin, he "goes low" and my son feels uncomfortable at best. I don't want to think about the worst case scenario but all of us who have children who are facing type 1 diabetes every day know that extremely low blood sugar levels can also cause seizures, unconsciousness, or even death.
I share these things with you because my job is to inform and my son has allowed me to share our story with hopes it might help you. Researchers don't yet know why some people are stricken with type 1 diabetes. They believe there's a genetic component to it and that environmental triggers cause some people to get it. But we had no family history and to this day we don't know what triggered Ben's onset of the disease. And yet, our son has type 1 diabetes.
These are the kinds of stories being told this week in Washington DC at the Children's Congress--a project of the Juvenile Diabetes Research Foundation. A delegation of 150 young people, 4-17 years old, will be led by International Chairman Mary Tyler Moore as they meet with lawmakers to tell them their stories and to encourage them to continue funding research. Among the delegates are seven-year-old Jonathan Richard Platt and Michelle Smolarski, 17, who are representing the Greater Los Angeles Chapter of the JDRF. Here are a couple of links to videos so you can see these wonderful kids:
http://cc.jdrf.org/delegates-2011/ca/jonathan-1.php
http://cc.jdrf.org/delegates-2011/ca/michelle.php
All of this is to say: It can happen to you too. Three million Americans are living with type 1 diabetes and 80 new patients are diagnosed every day. That's why it's important for everyone to recognize the symptoms of type 1 diabetes so that if it does, you won't find yourself in a hospital emergency room. According to the Juvenile Diabetes Research Foundation, the warning signs that you or your child may have type 1 diabetes are extreme thirst, frequent urination, sudden vision changes, sugar in urine, fruity, sweet or wine-like breath odor, increased appetite, sudden weight loss, drowsiness and lethargy and heavy labored breathing. If you or your child are experiencing any of these symptoms, you should call a doctor. If you want more information, you can go to JDRF's website at jdrf.org or jdrfla.org.
On Tuesday, U.S. Supreme Court Justice Sonia Sotomayor, Olympic gold medalist and swimmer Gary Hall Jr., NFL football player Kendall Simmons, recording artist Crystal Bowersox and others who have type 1 diabetes will participate in a Town Hall panel "Role Models with Type 1 Diabetes" at 10:30 a.m. EDT (7:30 a.m. our time). If you'd like to watch or participate, go to www.cc.jdrf.org/LIVE. You can also join the conversation at @JDRFAdvocacy on Twitter and add the hashtag #JDRFcc11.
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