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My trip began as I flew from Dallas to my home town of Philadelphia and then caught an early Amtrak train to New York City. Growing up in the Philadelphia area had given me an appreciation for U.S. history, but today I was going to learn something new: the history of diabetes. My daughter, Sarah, was diagnosed with type 1 diabetes in 2003, yet I didn't know much about the history of the disease. Living every day with the stress and worry that many parents have, I felt I had no time to spend learning how we got to the modern treatments we have today. I had focused only on doing my job as caregiver and supporter of my daughter. I was looking forward to learning something new.
Leaving downtown Philly, hot coffee in hand, I gazed out my window seat as old neighborhood after old neighborhood whizzed by, and I began to wonder what life was like 100 years ago for someone with diabetes. I had no idea how people were treated back then. Did they even know what diabetes was? Was there insulin or some other form of treatment?
My train soon pulled into Penn Station in the heart of Manhattan, and I exited into the madness that was morning rush hour. After a day tied up on calls and in meetings, I broke away at 4:00 pm to head to the New York Historical Society (NYHS). With camera, pen, and pad in hand, I grabbed the first cab I could and headed off to the Upper West Side, as the exhibit would close at 6:00 pm and I wanted plenty of time to soak it all in. Once on Central Park West, I noticed that all the light posts were draped with banners displaying the word INSULIN. Wow, this was a big deal.
I had only heard about the exhibit a month ago when Larry Ellingson, a former Eli Lilly executive and past president at the ADA, mentioned he was going for the grand opening of the exhibit. I knew that if Larry was going, it was a must see!
I exited the cab at 71st street...finally here. I entered the museum, checked my bag at the door, and paid my $12 to the attendant. When I poked my head into the exhibit hall, I noticed only three or four people there, so I decided to take some pictures first so as to not disturb anyone else. The hall was about 150 feet long by 100 feet wide and designed to follow a path based on historical "chapters." I grabbed my pen and paper and started in on Chapter 1.
I discovered that the history of diabetes dates back to the 15th century, when the most famous medical book of the time, Kethem's Fasciculus Medicenae, noted the change of color in urine that signaled the presence of diabetes, which came to be known as "the pissing evile." Early remedies for diabetes included the use of spring water, treatments of gold and arsenic, special diets, and a variety of "quack" medicines.
In the late 19th century, scientists identified specific clusters of cells in the pancreas that were related to diabetes. They knew that if these cells were removed, their absence would cause diabetes. These cells, the Islands of Langherhans, were named after the German doctor who discovered them - but still nobody fully understood the mechanics of the pancreatic system.
Onto the early 20th century and the next chapter, which recounted the efforts of Dr. Frederick Allen to prolong the lives of diabetic children through the use of a "starvation diet." This diet restricted patients to fewer than 1,000 calories a day, and, from what I saw, met with very poor results. I felt myself wanting to move quicker through this period, before I thought too much about it, since I began thinking about just how difficult this diet must have been for everyone involved..
It was now past 5:00 pm, and more people had made their way into the exhibit hall. I found myself wondering what drew the people here. Did they have family members with diabetes? Were they in the medical field, or were they researchers or employees of a pharmaceutical company? As I looked down through the glass at 100-year-old keto-sticks, I realized I'd better not get into a conversation with the person next to me since the exhibit was closing in less than an hour (those that know me realize how difficult this is for me!).
I quickly moved onto the next chapter - this was it! I felt better. This chapter, called "Breakthrough!" chronicled the events leading up to the discovery of insulin in 1921 by Dr. Frederick Banting. This was the most fascinating part of the entire exhibit because it involved a clash of personalities among the scientists and the day-by-day progress leading up to the first trials on human patients. I got goose bumps reading the letters exchanged between Dr. Joslin and Dr. Banting about the positive outcomes and shared in their excitement. I also read quite a bit of the March 22nd Toronto Daily Star headline story that featured the work of the doctors.
Reading many of the letters to Dr. Banting from so many clinicians and parents desperately wanting access to the miracle drug was very emotional for me, something I did not expect as I moved through this chapter. A good part of the exhibit chronicled the story of Elizabeth Evans Hughes, whose recovery provided powerful testimony to the power of insulin and really helped bring the work of Drs. Banting and Allen to the world's stage.
I was particularly struck by a picture of a little boy draped in his mother's arms. I could feel the anguish on their faces. This three-year-old boy weighed only 18 pounds in December 1922, before becoming one of the fortunate few to begin taking insulin. Three months later, he looked completely different, weighing in at nearly 30 pounds. The exhibit also featured many letters written to Dr. Banting by those whose lives were saved. It was fascinating reading each one. Other interesting artifacts included display cases of syringes, vials, testing kits for blood sugar, and actual treatment charts (or, as we call them today "BG Logs").
It was now 5:30, and I had 30 minutes left. The next chapter shared the story of how insulin became available for widespread medical use through a partnership between the University of Toronto and Eli Lilly & Company in the 1920s. It was fascinating to learn about the difficulty of manufacturing insulin in mass quantities. I also saw an original Abby Cady rag doll. Named after her maker, these dolls were sent by the president of Eli Lilly to Dr. Joslin's patients. The girls called her Lilly, and the doll came with her own syringe case. This doll is personally special to us because Larry Ellingson presented my Sarah with a "Lilly" doll six years ago at an ADA event where she was the Youth Ambassador.
As I moved into the exhibit's final chapter, covering the current state of research and treatment of diabetes, I was stopped by a woman who asked if I worked at the NYHS. I guess I looked official with my pad and paper, taking diligent notes. She introduced herself and, with a reticent sense of pride, shared the fact that she was type 1 and had been for almost 30 years.
As she and I shared our stories, I realized that this was the perfect end to my visit. She showed me her childhood doctor, whose picture was on the wall and was featured as one of the great modern era doctors. She then asked me, "Do you know what bothers me the most about diabetes?" My thoughts wandered to 3:00 am tests, ketones, finger poking, the lack of a cure.....but, interestingly, she said it was "the ignorance that people have about diabetes." She could manage her own condition, but could not control the misperceptions of others.
It was now 6:15, and we had already overstayed our welcome. I skipped the final chapter, realizing that I already know about current developments because I live it every day and keep up with all the amazing research happening at the ADA, JDRF, and Diabetes Research Institute (my three favorites). We quickly moved into the museum bookstore, where they let us stay just a few more minutes. I bought some syringe pens and a plush pancreas pillow.
The following statement, in a 1922 letter to Dr. Joslin from one of his early adult patients, sums up the jubilation of the time: "If the true Christian be the close imitator of Christ, then the discoverer, and the one who applies the discovery, should feel that they are literally following the one who said: - ‘I am come that they might have life, and that they might have it more abundantly.'" It also expresses the way I feel now, appreciating how we got here today, and how I will feel if I'm fortunate enough to be here for the cure that is coming.
The New-York Historical Society's exhibit "Breakthrough" runs through January 31, 2011.
I would like to take this opportunity to share a few of our family's favorite resources:
MyCareConnect.com - Six years ago Pam Henry (my wife) started a free online and mobile communication tool for people with diabetes and their caregivers (family and friends, school personnel, and medical professionals). The iPhone app is called BlueLoop and is set for release January 1st.
Childrenwithdiabetes.com -- This organization offers families and caregivers guidance, with original high-quality, science-based content and practical suggestions from trusted sources such as pediatric endocrinologists, certified diabetes educators, nurses, nutritionists, researchers, advocates, and fellow parents.
Diamyd Medical - Their vision is to one day prevent and cure diabetes. The Diamyd® vaccine has significantly slowed down the disease process and is currently in clinical Phase III studies in Europe and in the US. The study is called DiaPrevent. The purpose of the studies is to determine whether Diamyd® can preserve the body's own insulin-producing capacity in particular persons diagnosed with type 1 diabetes.
TuDiabetes.org - With over 12,000 members online members, this website is a great place to make friends, share your story, learn, give, and find a hand (the non-profit Diabetes Hands Foundation supports our mission).
Insulindependence.org - It is their mission to inspire people with diabetes to set personal fitness goals, educate them on adaptive management strategies through hands-on experience, and equip them to explore their individual capacities.
10 comments - Jan 3, 2011