Karen Talmadge, PhD:
Supporting Research in Honor of Her Daughter
Published September 2008
A biochemist and molecular biologist by training, I oversaw a biotechnology research team pursuing novel treatments for diabetes from 1987-1990. Fortunate to work with two of the world's top diabetes academic experts at the time, my team and I focused on fundamental mechanisms and how the treatments helped, but did not cure, diabetes.
"Never think you know what it is like to have diabetes," said my mentors. "Always," they continued, "recognize the burden of the treatments and the burden of the complications on the people who have diabetes, and on the people who love them."
Those words came rushing back in 1992, when my husband, John Fiddes, PhD, and I diagnosed that our two-year-old daughter, Nicola Talmadge Fiddes, had type I diabetes. Those early days were difficult. As a scientist, I knew that diabetes was a profoundly disruptive and deadly disease. I also felt a sense of loss, guilt, and grief, because, like every parent, I wanted my child to have a limitless horizon of possibilities, and now I knew she would not.
We quickly recognized that Nicola was a child first, and not "a diabetic." Diabetes isn't who she is; it's what she has. We decided to try to see the world from her eyes, and to allow her to control as much of her diabetes as she could handle, at every age. Some of our choices were unusual, especially in the beginning.
At the time, people with diabetes were taught not to eat sugar. As scientists, we did not see the evidence for this, so we incorporated small amounts of sweets into her diet (a practice accepted today). For example, we put things like jelly beans and hard candies into glass jars labeled with the amount of carbohydrate per piece, trying to teach her how to include appropriate amounts of treats in a healthy diet, and how to count carbohydrates at the same time.
We also sent her to pre-school with a cell phone, so she could reach one of us at any time. Just before her fourth birthday, she grabbed the glucose meter and said she wanted to test herself. She did this perfectly, so she did her own testing from then on. She chose to go on the insulin pump at age 8, and has been independently managing her diabetes since she was 14.
Like all people with Type I diabetes, Nicola has to think about her disease every 1-2 hours, testing her blood sugar, calculating the carbohydrate in her food, administering insulin and/or adjusting the settings on her pump. No matter how hard she tries, she cannot always maintain normal blood sugar levels, because some things that affect them cannot be measured or altered. Each blood sugar "high" and "low" can make her feel ill, and she has these on a daily basis.
The psychological and physical burdens are great, because even with the best control, she may still have complications. We tried to teach Nicola not to be ashamed or hide her diabetes, not to worry that we would be disappointed if she got a bad result, and not to guess if her blood sugar was high or low. "Just test," we told her. "Test even if you are on the soccer field or playing with friends. Get the data, and you will know what to do," we said.
My family, with Nicola in her stroller, first volunteered for the American Diabetes Association by joining the America's Walk for Diabetes (now Step Out) in 1994. Since then, I have been honored to serve on the American Diabetes Association’s Board of Directors (2004 -2007) and to become a member of the Research Foundation Board. John and I also made multiple contributions as members of the Association’s Pinnacle Society. Recently, Nicola started a Facebook group for young adults with diabetes, now with over 300 members. She also volunteers through the Association's San Jose office and speaks at various events, to share her story with people who don't know what it is like to live with diabetes.
Given the number of people who have diabetes and the toll it takes on health and lives, diabetes research is woefully underfunded. This discourages young researchers from choosing diabetes as their career, and established investigators from pursuing bold research avenues, where breakthroughs might occur. The Association's research funding is critical in encouraging investigators to focus on diabetes research, and study innovative ideas.
We have more work to do at the American Diabetes Association until we find a cure. Even if diabetes was cured tomorrow, my daughter and millions of others will still have to live with the consequences of diabetes. This is why, in the meantime, we must search for better treatments. You can also make a difference for someone you care about by making a donation or volunteering. Please do everything you can to help, whatever that may be.
Nicola will be heading off to college in the fall. Moving away from home for the first time, we know that managing her diabetes will always be a challenge. I still do not really know what it is like to have diabetes, but I have a ringside seat