Growing up, Mary Elizabeth Renner Saalfeld was allowed desserts on only a few occasions: A piece of cake for her birthday and her father's birthday, pie for Thanksgiving and fruitcake for Christmas.
She was diagnosed with Type 1 diabetes 68 years ago. Now 77 and retired in Springfield, Va., Saalfeld, who goes by Liz, is an avid quilter, loves watching sports on TV, arranges flowers for her church and has traveled the world – from China to Italy and Hawaii.
"It's my life," she concludes about having diabetes. "I think I've had a very successful life. A very full life." She worked as a medical technologist and stay-at-home mom and ran a career center for a secondary school for 22 years. Though she has undergone a triple bypass as a result of her diabetes, she says no other part of her health is affected.
Reaching this age is a special triumph for people with Type 1 diabetes. Most who were diagnosed in the early 20th century weren't expected to live past their early 50s.
Some have defeated the odds, though, in what they mainly attribute to their positive attitude about their condition and the care they take in monitoring their health. Wallace Gordon, also 77, was diagnosed with Type 1 diabetes when he was 15. "I have a general philosophy that diabetics should treat their condition with lifelong acknowledgement but not with restriction," he says. "Never let it be a preoccupation in terms of what you do or how you do it."
Type 1 diabetes limits the body's ability to produce insulin, the hormone that converts sugar, starches and other food to energy. The disease affects nearly 3 million Americans, of which 85 percent are adults, according to the Juvenile Diabetes Research Fund, an organization that funds Type 1 diabetes research. Its serious long-term effects often lead to amputation, blindness, nerve damage or heart and blood vessel damage. People with Type 1 diabetes must always monitor their blood sugar, take insulin and carefully count carbohydrates. They ideally should see an endocrinologist, a doctor who specializes in hormonal disorders and diseases like diabetes, for checkups every three months.
The condition is genetic. One of Gordon's three sons has Type 1 diabetes, as does one of his eight grandchildren. It can also affect a woman's pregnancy. Saalfeld developed high blood pressure and retained fluid when she was pregnant with her son, which resulted in an emergency cesarean section after only seven months. She cared for her son, who had multiple sclerosis – a disease that deteriorates the nervous system – until he passed away at age 32.
Saalfeld and Gordon are among 850 patients with Type 1 diabetes taking part in a study being conducted by Joslin Diabetes Center, an educational, research and clinical care organization affiliated with Harvard Medical School. The participants were selected from 3,900 Joslin medalists who have lived with Type 1 diabetes for various milestones, from 25 to 85 years.
The goal of the study is to discover why some people with Type 1 diabetes can live for a long time without developing serious complications. Participants were asked about health complications and lifestyle, including how often they exercise, how long their parents lived, their diet and whether they take medication. Researchers then tested their eyes, kidneys and hearts.
George King, the director of research and head of the Section on Vascular Cell Biology at Joslin and professor of medicine at Harvard Medical School, says about 35 percent of study participants did not have significant eye, nerve or kidney problems. Heart disease, however, has not appeared to be an exemption for any of the patients, he says.
Gordon, for instance, has had a few complications associated with his diabetes. He has had a quadruple bypass and coronary artery disease that led to the placement of stents in his artery. He has also had charcot foot, which is a weakening of bones in the foot and caused by nerve damage. Still, he says one of his greatest satisfactions is being told he looks younger than he is. "All I know is I feel pretty doggone good the way I am," he says.
Interestingly, King says he has rarely seen people with Type 1 diabetes have Alzheimer's disease, and the hair of many women doesn't turn gray until they're 70 or 80 years old. He has noted physicalexercise plays a large role in life expectancy. About half the participants who didn't develop serious complications did not exercise careful control over their diabetes throughout their lives, though this may be attributable to nascent care and the type of insulin available, King says. The researchers are trying to find out what sets some participants apart.
For instance, King is able to pick out seniors with Type 1 diabetes from a crowd just based on their positive demeanor, he says.
Saalfeld attributes her optimism as the No. 1 reason she has been able to remain healthy for so long. Students who had Type 1 diabetes approached her when she worked at the career center to ask about her experiences with the disease. She listened to them and encouraged them by sharing how she had managed her diabetes. "I didn't feel sorry for them," she says. "There's no reason to. You can live with diabetes."
King says the most successful patients have been open to using new technology. Gordon injected himself with a single shot of insulin using a syringe for 25 years, then gradually moved to four shots a day. He now uses a pump. "I'm particularly fond of my pump's useful calculating and recording," he says. "The technology is coming closer and closer to mimicking the function of the normal human body."
He has aimed for regularity in eating and exercise, and recommends other people with diabetes do the same. He also recommends people who have diabetes to not become obsessed with every little variance that develops in the course of their lives, he says.
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Gordon spent most of his career working in the journalism industry, which was stressful given its late hours and intense work. Stress has an effect on a person's blood sugar, which can change personality, so Gordon needed to continuously monitor his carbohydrate intake and insulin. He only felt restricted by diabetes once, during college at the University of Pennsylvania. A staff member at the school's medical center told him he shouldn't be on the crew team, even though the coach thought he showed significant promise. "They said they didn't want any diabetics dropping in the Schuylkill River," he recalls.
Gordon now lives in a retirement community with his wife in Lancaster, Pa. "She is a very conscientious and caring wife, which is a great component for any diabetic," he says. "They can read you. They can sense how you're functioning. They can see how you look."
Saalfeld has received the same support and encouragement from her husband, Fred, of 55 years. When she was a child, her parents immediately accepted the fact that she had diabetes, she said, and she was never ostracized at school, but instead received encouragement.
Her family simply wouldn't eat any food she couldn't eat, never complaining or feeling sorry for her. Her aunt even invented a sugar-free ice cream. "Everybody loved it!" she says proudly.
Saalfeld carefully reads food labels to help her make any necessary substitutions. "You have to eat correctly, you have to check your blood sugar, you have to exercise, with no exception," she says. "I have never really gone off my diet and never will."
King says careful patients like her who keep track of their everyday activity and glucose level can successfully lead normal lives. He encourages patients to learn everything they can about their condition and to educate each other and their physicians about their bodies, since everyone is different.
Saalfeld still uses syringes four times a day and monitors her blood sugar herself. She doesn't take much insulin because she can tell how much her body needs by her physical reactions and how she is feeling, she says. She only goes to the doctor when she has a problem.
"There are no secrets out there," Gordon says. "You learn to adjust, and you learn to accept you can live a very good life with it."