Amelia Cooper: Living With Type 1 Diabetes
Thank you to the editors of Missouri Medicine for inviting me to write this article and share my experience as a teenager with type 1 diabetes. By writing about diabetes from a young patient’s perspective, I hope I can bring insight based on my experience with what works, what does not, and how to keep motivated.
Diabetes management is a daily burden. By using the most up-to-date medical devices as well as being proactive with diet and exercise, the disease is manageable. Burnout from this rigorous regimen is common and keeping engaged and upbeat is a big issue — especially for teenagers.
On July 13, 2012, at age 12, I was diagnosed with type 1 diabetes (T1D). That summer was very hot in Missouri, but I was drinking even more water than my friends - several large glasses an hour. Without any family history of this chronic disease, the diagnosis was a complete shock to my family and me. While my friends worry about homework, social events, and the latest fashions, I have the added stress of blood-sugar control. Diabetes is unrelenting, yet manageable, and it has altered the shape and trajectory of my adolescence. With tremendous support of friends and family, and by utilizing state-of-the-art technology, I have been able to successfully navigate this stage of my diabetic management. I have also journeyed into scientific research and advocacy with a goal of the betterment of T1D care.
My diagnosis came out of the blue. I was scared and overwhelmed in the hospital during my inpatient stay. While I would not have believed it at the time, I was actually much luckier than most kids in my situation. Kansas City has the nationally famous Children’s Mercy Hospital with superb pediatric endocrinologists. My dad is an ophthalmologist, so the new medical jargon of diabetes was easy for him to understand. Perhaps most significantly, my mom fought for me to get an insulin pump and a continuous glucose monitor (CGM) as soon as possible. Most insurance companies make a patient wait six months to get an insulin pump and a CGM, but I received mine within six weeks.
The insulin pump and CGM allowed me to quickly establish a new, relatively manageable routine, and to continue doing well at school. Still, school started only four weeks after my diagnosis, and this was all new, so I had a couple weeks of finger pricks and insulin shots during the school day. (See Figure 1.) While I waited for my CGM and insulin pump, my mom had to check my blood sugar a few times each night and wake me up for correction shots or to drink juice. With an insulin pump and CGM, most of those nightly disturbances are avoided. (See Figure 2.) Having diabetes is exhausting enough without waking up three or four times per night to test and correct a high- or low blood sugar. Also, with the insulin pump, I did not have to endure a shot just to eat a snack with my class. More importantly, the CGM alerted me when my blood sugar started trending up or down, allowing me to adjust my basal rate (hourly dosage of insulin), give myself a correction bolus or eat a piece of candy. The CGM is also vital for my sport, cross-country running. (See Figure 3.) With it, I could plan how much I needed to eat before practice each day and feel confident that I would be alerted to a dangerous low while running. Luckily, my two cross-country coaches were very supportive and interested in helping me do well. They even carried Skittles with them at all times in case I needed a sugar boost.
Figure 1.
Before Amelia got her insulin pump and CGM, she and her mom had to get up several times during the night to measure her glucose, make medication adjustments and treat lows.
Figure 2.
Amelia shows off her CGM which has made her much healthier and happier and able to participate in exercise and athletics.
Figure 3.
With a GCM and an insulin pump, Amelia is able to run competitively and recreationally. Her father Blake Cooper, MD, can barely keep pace.
The new technology was not without problems, as it caused me anxiety and distractions at school. The CGM buzzed and beeped throughout the day, in the middle of class and even during tests. I hated drawing that kind of attention to myself and interrupting the teacher. Both the OmniPod and Dexcom sensors sometimes fail. When these mishaps occur, their receivers make a high-pitched alert that frightened me at first. Since my school does not have a nurse, I must go home to change my insulin pump or sensor. We live nearby, so I can dash home from school, change out devices, test my blood sugar, and get back within an hour. With a much better understanding of the disease, the medical devices and the timing of insulin, diabetes management takes about twenty minutes out of my day unless I have a random pump or sensor failure.
Particularly in middle school, my teachers and principal were very involved in my diabetes management. Without a school nurse, their willingness to learn about diabetes and the treatment of low and high blood sugar as well as the use of a glucagon pen were particularly important. My dad met with the middle-school administrators and all six of my teachers and gave them a half-hour lesson on T1D and its management. All of my teachers keep glucose tablets in their desks and my friends and sister carry glucose tab keychains on their backpacks. There are now five kids in my high school (of 400 students) with T1D so I can always ask one of them for help as well. We definitely keep an eye out for each other.
Eighth grade students at my school engage in a one-day “internship.” My dad had met people from the blog Diatribe (www.diatribe.org) at an endocrinology conference and was very impressed with their work. Since their offices are in San Francisco, where my grandma lives, my dad and I decided to spend a day with Diatribe. This intelligent group of young professionals is working hard to improve health and education and how it affects diabetics (both type 1 and type 2). Many Diatribe staffers are type 1 diabetics. They are proactive. Only if you have ever experienced a high blood sugar reading followed by the excruciatingly long wait for insulin to take effect, would you understand the “light bulb” moment when I saw someone in the Diatribe office treat his high blood sugar with a quick jog. Diatribe asked me to write for their online publication. I chose “Top Ten Things I Wished My Parents Knew When I Was Diagnosed.” It was so exciting to see my name attached to an article in a professional journal. I began to recognize some upside of living with type 1 diabetes and finding my voice.
By this time, I was realizing that I was better off than some of my peers with diabetes. My mom and the moms of my closest friends have learned to cook low-carb meals. My dad runs with me on the weekends and my mom manages my insulin pump and CGM at night. My sister, Lilly, never complains about the absence of bread in our house. Being able to manage the trifecta of medicine, exercise, and food is vitally important for teens. I decided to volunteer as a junior ski instructor for a T1D camp to teach kids how to juggle these things while skiing. Two of my non-diabetic friends came along for the three-day camp. Together, we checked blood sugars in the cold Wisconsin weather. This experience inspired me to investigate how altitude and the cold weather affect glucose management. That same year, during an independent-study week at our school, two of my closest friends and I conducted an experiment that tested the effects of altitude on blood sugar. Our results showed that higher altitudes did affect my blood sugar levels, while those of my non-diabetic peers were not affected at all. I was surprised to find that at sea level, my blood sugar average was extremely close to that of my friends.
These results gave me hope that with proper management, I can be just as healthy as a non-diabetic person. Our experiment and findings were presented as an abstract at the American Diabetes Association (ADA) annual meeting in June 2015. The success of our first experiment prompted my friends and me to conduct another experiment. This time we examined the relationship between stress (cortisol levels) and blood sugar levels. We each wore a CGM during the day of a mid-term exam and again during a relaxed day during winter break. Our results showed that while stress did not affect blood sugars of non-diabetics, stress did elevate my blood sugar considerably. Our stress-cortisol levels were similar during our ski week. This emphasizes the importance of diabetics proactively lowering and managing stress. This second project was selected for a poster presentation at the August 2016 American Academy of Diabetes Educators meeting. (See Sidebar.)
I have become active with the Kansas City Juvenile Diabetes Research Foundation (JDRF). When they opened up applications to attend the Biennial JDRF Children’s Congress, I jumped at the chance to apply. When I was selected, I was thrilled for the opportunity to be an advocate for the JDRF in Washington D.C. I was able to experience the intricacies (and frustrations) of government firsthand. To prepare for our congressional meetings, the delegates went through a “Hill Blitz” training session. We learned how to thank members of Congress for renewing the Special Diabetes Program; how to encourage co-sponsorship of certain diabetes bills. On the Hill, I spoke with U.S. Senators Roy Blunt and Claire McCaskill and U.S. Representative Emanuel Cleaver II. I was selected to testify before the Senate Special Committee on Aging to tell my story about the challenges and rewards of young people living with T1D. (See Figure 4.) See my testimony at http://www.c-span.org/video/?c4544517/amelia-coopers-testimony. This experience invigorated me to stay healthy and advocate for medical-research funding.
Figure 4.
Amelia was selected to testify before the Senate Special Committee on Aging about the challenges and rewards of living with T1D.
View testimony here: https://www.c-span.org/video/?c4544517/amelia-coopers-testimony
Unfortunately CGM technology is still not available to Medicare patients. While 95% of private medical insurers cover the costs of CGMs, Medicare lags behind. This is a huge problem for older type 1 diabetics who are at a greater risk of severely low blood sugars. As diabetics age, these low blood-sugar levels are difficult to sense with the normal physical cues (sweating, shaking, disorientation, etc.). I strongly support the necessity of CGMs for short-term and long-term health in diabetic patients. With continued work, I hope the Medicare CGM Act becomes law.
The T1D Exchange Clinic Registry’s mission is to “improve the lives of all people touched by T1D by facilitating better care and accelerating new therapies through a collaborative data collection and sharing network.” In May 2015, the Exchange published in Diabetes Care Hemoglobin A1c data from more than 16,000 patients ages 2 to 95. Sadly, my peer group in the Registry did the worst. Adolescents averaged a 9.0% A1c compared with the 9.5% registered by the same age group two decades ago. The American Diabetes Association recommends that adolescents should have an A1c that is lower than 7.5. Even with all that is available, many teenagers still struggle with managing their diabetes.
I am positive and a hard-working optimist. I believe that not only universally available better treatment is in store but eventually a cure is on the horizon for all forms of diabetes.
Blake Cooper, MD: Comments From Amelia’s Father
As a vitreoretinal surgeon, I spent my first decade of practice helping patients with advanced complications from diabetic eye disease. I understood the pathophysiology of how and why patients lost their vision. I was even was able to halt the progression or at times reverse to damage of diabetic eye disease. I have been fortunate to practice during a time when anti-VEGF agents and small gauge vitrectomy surgery were developed. This has dramatically improved the outcomes for my diabetic patients.
What I did not understand was what it was like for my patients to live with diabetes and how they got to the point of developing visual loss. I will never fully know this but over the last few years caring for my child with T1D, I am beginning to have a better understanding. I truly believe that this has made me a better physician. As such, I want to be able to “fix” my patients. As a parent I want to protect and “fix” the problems my child faces. With this in mind over the last four years, I have realized that “fixing” diabetes means trying to figure out a way to reduce the treatment burden and minimize the complications of hyperglycemia.
To this end I attend several endocrine meetings each year trying to learn as much as possible. I am searching for a cure for my diabetic daughter but also a better understanding of how to help all patients with diabetes. It is truly amazing the progress and change that has occurred since I finished my training. During pharmacology in medical school, I only had three classes of antihyperglycmic agents to learn. Now there are a least 12 different classes of medications with an ever-expanding number of combination drugs. This means better options and outcomes for our patients. I would love nothing more than to never have to treat another patient with diabetic eye disease. Sadly, that day is not in the near future. I do believe that in the future preventing diabetic eye disease will be possible. The future is promising for patients that are able to access the best care we have to offer. However, only about half of the patients that need care are receiving it. Also many diabetics are not invested with adhering to optimal self-care (e.g. weight management, nicotine avoidance, exercise, diet, etc.) We can and must do better. The hardest part is getting state-of-the-art devices and treatments to those that need them. Whether it is our patients or loved ones, it is important to remember that everyone deserves the best possible care, support, and understanding.
Editor’s Note
Amelia Cooper, age 16, is the youngest person to author a featured article in Missouri Medicine’s 112 year history. Kudos to her for her intelligence, tenacity, optimism, clinical research, and her abiding commitment to make life better and longer for all diabetics.
Amelia is one year younger than Chelsea Grigery, MD, who, in September/October 2005, at age 17 was the youngest published author in the Journal’s history with an article on Bacteriocidal Activity of Lizard and Mouse Serum for Borrelia Ionestari, Putative Agent of a Lyme-Like Illness in Missouri, based on a science project in her junior year of high school in Sikeston, Missouri. Miss Grigery went on to graduate from UMKC School of Medicine and a residency in Pediatrics from St. Louis Children’s Hospital-Washington University School of Medicine. Dr. Grigery practices in Cape Girardeau, Mo.
Biography
Amelia Grace Cooper, 16, is a junior at The Pembroke Hill School in Kansas City. Blake A. Cooper, MD, MSMA member since 2004 and vitreoretinal surgeon in private practice in Kansas City.
Contact: blakecooper@kcretina.com
