12/5/2013
A Diagnosis of Type 1 Diabetes
Connects a Child To Her Rich Family History

Since her diagnosis of type 1 diabetes in 2010, Amelia Curley, age 12, has discovered the many silver linings of her life with diabetes. “I’m smarter with food choices, I’m better at math and it’s easier to go to the doctor,” said the upbeat 7th grader from Nyack, New York, who receives her care at the Naomi Berrie Diabetes Center.

Amelia made another discovery that has enhanced her young life forever. She learned that her great grandfather, Edwin Manheimer (the only other person in her family to be diagnosed with type 1 diabetes) was among the first people in the world to receive insulin—and it was at Columbia University’s Presbyterian Hospital in 1922, where Amelia spent a night nearly 90 years after her great grandfather had been hospitalized to receive a revolutionary new diabetes treatment—insulin.

Edwin and Amelia

“I knew my grandfather had type 1 diabetes, but not that much more about him,” said Karen Manheimer, Amelia’s mom. “Because type 1 diabetes had never shown up in any of the subsequent generations, it didn’t come up. The last thing we expected was Amelia to get sick. We were totally unprepared.” "I think it’s really cool that I am related to someone who was such a pioneer in the treatment of type 1 diabetes,” added Amelia, a detail of her story that might have been lost, if not for her own diabetes.

It didn’t take long for doctors at the Naomi Berrie Diabetes Center to make the connection between Amelia Curley and her great grandfather. For one thing, Karen’s last name was well known—especially to clinicians trained at Columbia. “I recognized the name Manheimer immediately,” said Dr. Robin Goland, the Berrie Center’s Co-Director, who graduated from Columbia College of Physicians and Surgeons in 1980. “Amelia’s great grandfather was well known in the Columbia Endocrinology Division, and his case history has been used to teach medical students for decades.” 

Edwin Manheimer was diagnosed with diabetes at the age of 6, in 1918, 4 years before the discovery of insulin, a time when type 1 diabetes was fatal within a few years. After having symptoms much like Amelia’s (frequent thirst and urination, weight loss and lethargy) Edwin was put on a starvation diet, the only treatment at the time. By 1922, his parents were told that his situation was hopeless—and on November 16, 1922, when he finally entered Presbyterian Hospital, he was 10 years old and weighed 27 pounds. 

Edwin Bike

Fortunately in this year, 1922, insulin was discovered and was first being tried in patients. The doctors at Columbia-Presbyterian wrote to Drs. Frederick Banting and Charles Best in Toronto, the discoverers of insulin, and were among the first doctors to receive insulin for use in patients, such as Edwin. As documented in Edwin’s chart, his response to insulin therapy was nothing short of miraculous. At hospital discharge, Edwin was seemingly the picture of health: he had regained all the weight he had lost and looked and felt well. 

While insulin treatment saved Edwin’s life, and the lives of all of the patients with type 1 diabetes who received insulin in the early years, there was a still a lot to be learned. In 1995, a landmark study called the Diabetes Control and Complications Trial (DCCT) showed for the first time how strict glucose control, using approaches not available when Edwin was alive, delayed and even prevented diabetes complications, such as eye disease that can lead to blindness and kidney disease that can lead to dialysis. After the introduction of insulin but before the DCCT, while type 1 diabetes was no longer fatal, many patients like Edwin did develop the long-term consequences of poorly controlled diabetes. In contrast, someone born today who develops type 1 diabetes can expect to remain healthy and life expectancy is predicted to be increasingly close to normal.

Born and raised in New York City, Edwin Manheimer lived to be only 50 years old, but his life was filled with multiple accomplishments and triumphs over adversity. He built the taste and scent business his great uncle started, and became a leader in that industry despite becoming blind as a young adult, a result of his poorly controlled diabetes.

“He was a terrific father,” said Stephen Manheimer, Amelia’s grandfather, who recalls accompanying his father on business trips and helping him fill his syringes with insulin. “We would go together to towns that he had already seen, and he would describe by memory, the sites that I was enjoying as a tourist. He was remarkable.” Edwin built a chemistry lab in the basement for his sons and taught them how to identify various tastes and smells, eventually getting both Stephen and his brother Arnold interested in the family business. Today, Stephen, Arnold as well as Karen Manheimer, Amelia’s mother, work in the business that Edwin built.

“How many children with type 1 diabetes can trace it back to a great grandfather?” asked Stephen Manheimer, “She’s special for that.” Adds Amelia: “It makes me feel like a celebrity.”

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