Last week was a big week for JDRF. It started on Nov. 1 with the newly-declared “Type 1 Day” and continued as the well-known nonprofit unveiled a new logo. But the fun didn’t really start until JDRF sent a powerful message to the Food and Drug Administration by way of full page ads in the New York Times and the Washington Post – two of the nation’s most circulated newspapers
I’m fortunate to be a Diabetes Advocate, which connects me to hundreds of others with a vested interest in research and curing diabetes. Since the ad first ran, I’ve been reading a series of emails and forums which discuss the ad — both positively and negatively. As soon as the ad hit the newsstands, the controversy swirled. As you can see below, the ad featured a child named Piper who has diabetes. Below Piper’s picture was a message that 1 in 20 people with type 1 diabetes will die from a low blood sugar (also called insulin shock). That statistic, along with the use of a young child, angered many, but I wasn’t one of them.
When I saw the ad, tears came to my eyes as I (figuratively) patted JDRF on the back. As one friend put it, JDRF is finally doing what we’ve been wanting them to do for years. To me, the ad wasn’t about fundraising or about shock value or scare tactics, it was about truth. (And in a CWD thread, Dr. Aaron Kowalski said the same). That truth is: when I go to bed at night, there is a possibility I will not wake up. That’s harsh, but that’s reality.
This is the same statistic I’ve heard since my diagnosis at age 11, only with tangible numbers. It’s the reason parents of children with type 1 get up in the middle of the night to test their sleeping little ones. It’s the reason my mother didn’t sleep the first month I lived in an apartment alone at Auburn. It’s the reason my parents were ecstatic about my getting a continuous glucose monitor earlier this year because even at 29 years old, death is still a possibility. It will always be a possibility.
This statistic should not be a surprise to anyone. I don’t understand the math behind the numbers, but I do understand marketing. I also understand the FDA is currently looking at guidance for a low glucose suspend system – a life-saving tool. The current guidance makes it difficult to get a low glucose suspend system on the market. While this technology is available in other countries, it’s not available in the United States.
For my readers that may not understand what a low glucose suspend system is, let me explain. Many type 1 diabetics wear an insulin pump, myself included. That pump is programmed to give a certain amount of insulin each hour of the day, 24/7. When I eat, I manually program it to give me more insulin based on a math calculation involving my activity level, carbohydrate intake, current blood sugar and how much insulin I have still working in my body from a previous dosage. (It sounds complicated because it is… even more so when you’re not a math person.) When my blood sugar is low, my insulin pump continues to give me insulin unless I manually suspend it. The newest upcoming technology (called the Artificial Pancreas) includes a low glucose suspend system which means when I am low, it will automatically stop giving me insulin. THIS. IS. HUGE.
A fatal low blood sugar can happen anytime, but there’s a greater fear and risk at night (or whenever you sleep.) When the body is asleep, a person doesn’t feel the symptoms of a low blood sugar. If a serious low strikes in the middle of the night and the person doesn’t wake up, they will have a seizure, eventually passing out. Without quick treatment, the outcome is often death. Fortunately, I have always woken up when I’ve been low in the middle of the night, but I often don’t wake up until I’m already in the 30s or 40s. (I have a seizure in the uppers 20s). The reality is that if I have a seizure in my apartment at 2 a.m., and I lie there until someone realizes, I could die. That’s a reality; it’s my reality.
So 1 in 20 will die from low blood sugar in a lifetime? Yes, I believe that. Does it scare me? Yes, of course it does. But sending a powerful message to the FDA that lives are at stake and it’s time to do something about it makes me happy.
I participate in advocacy and outreach both locally and nationally, but usually, that involves other families with type 1 who understand diabetes. I blog about my life with diabetes, but most of my readers are diabetic or have a connection to diabetes. Sadly, most of my everyday friends don’t read my blog. Often, my tweets and Facebook posts referencing diabetes are ignored by those friends without diabetes. Only a handful of my friends show up to walk with me on Walk day, and a few more donate money toward finding a cure (thank you to those who walk and donate). They don’t know what it’s like because when they’re around, diabetes is not the focus. I’m just Victoria who has a couple of bionic parts that randomly beep.
My everyday friends don’t see me pee on a ketone stick because my blood sugar is high. They don’t see me change my pump site, only to have it kink and have to start again. They don’t see me stop every five miles on my bicycle because I have to drink more juice and eat a glucose tablet. They don’t see me at the pharmacy forking out hundreds of dollars a month on supplies to stay alive (and that’s with insurance).
But more than all of that, they don’t see me at 2 a.m. when I wake up with a blood sugar of 32. They don’t see me when I pull back the covers, drenched in sweat. They don’t see me as I try to stand up but my weak legs cause me to fall. They don’t see me unlock the front door in case paramedics come, and they don’t see me set the glucagon on the counter, just in case. They don’t know I tweet my overnight lows so someone knows to check on me. They don’t know that when it gets really bad, I call my mother because I’m scared of passing out and no one finding me till morning — when it could be too late. They don’t know that in college once, I dialed 9 and 1 ready to hit the last 1 because I could feel the beginning stages of a seizure.
I do not blame my friends, as it’s partly my fault because I don’t tell them what diabetes is like. I make my management look easy. I explain that I have good control, and I don’t have many problems because of it. I look healthy, and I’m active, so no one knows the struggles, especially the emotional struggles. I seem so carefree and casual about my diabetes in my everyday life that it’s impossible for my friends to know how NOT easy it really is. It’s refreshing to just be Victoria in everyday life, but sometimes, I wish more of my friends took a vested interest. So maybe, just maybe, this ad did more than speak to the FDA. Maybe it made others realize type 1 diabetes is not always a chronic disease, sometimes it’s terminal.
I don’t want to be the 1 in 20. I will continue to do everything in my power to prevent it from happening. I pay close attention what to eat before bed, and through trends from my insulin pump, I try to understand how my body’s sleep patterns react to my insulin. I know how to lower my basal rates if needed. I spent/spend a significant amount money to make sure I have a Continuous Glucose Monitor that will alarm when I hit 80. This statistic, which seemed to cause a stir, is the very reason parents get up in the middle of the night armed with lancets, strips and juice. It’s why your children have glucose tablets on their nightstand. It’s why I still text my mother the morning after a bad low because I know she will read my Twitter feed.
In my 18 years of having diabetes, I’ve had five seizures from low blood sugar. I remember each one, and all but one of them we could find the link to what went wrong. Two of the five, my mother was there. She was there for my first one when I was at a Christian sports camp, and she was there for my second one after I’d finished playing basketball. I don’t know what happened after the seizures began, but I remember vividly up to that point. I cannot imagine what it must have been like for my mother (or for others who were around me during the other three). I have been lucky. All five of my seizures happened around other people. I was never alone. When I stop and think about that, it blows my mind. I could have been the 1 in the 20, easily. I haven’t gone into insulin shock since 2001, and I hope to never again, but the fear is still there.
Wouldn’t it be great if we had an alarm connected to our body that could help prevent insulin shock? An alarm that sounded when we’re low and attached to it was an insulin pump programmed to stop delivering insulin when that happened? Without insulin, my body’s blood sugar raises automatically, even without food. Wouldn’t that sort of technology be amazing? Yes, and it’s why I support this ad because it’s time the FDA understands why this is so important – why it’s life and death. I don’t care if it’s 1 in 20, 1 in 50 or 1 in 100 – all of those are ONE too many.
At 11 years old, I understood dying from low blood sugar was a possibility. It scared me then, and it scares me now. But the information in that ad is nothing new to me, nor should it be to anyone else with type 1 diabetes. It’s real, but we (through JDRF) have a chance to make it less real. So I stand up and applaud JDRF for making a statement, and I pray the people in positions of power stop and pay attention.
When our community loses a person to diabetes, we light a blue candle like the one you see above. I don’t want to light any more blue candles.
EDITOR’S NOTE: Many other bloggers shared their thoughts on the JDRF ad and a few even dive into the numbers game more than I did. Here are a few more links:
(must read) Hallie of The Princess and the Pump: One in Twenty
Jess of Me and D: Advocacy in Print
Sara of Moments of Wonderful: Scary – but true and necessary
Jessica of A Sweet Life: This Diabetes Awareness Month Tell the World You are Not Equal
Martin of Diabetically Speaking: It’s Not About the Money
Michael of The Diabetic’s Corner Booth: Fighting for One
Laura of Houston We Have a Problem: 1 in 20
Author’s note: I have great control of my diabetes, managing it with an Animas insulin pump and a Dexcom CGM. My current A1c is 6.6. My parents were active in my diabetes management as a child, and if not for them, I wouldn’t be as responsible today. I’d like to make note that the five instances of insulin shock I mentioned above does not mean I was “uncontrolled” as a child. When a type 1 diabetic has a proper handle in management, lows are actually more prominent because “in range” blood sugars are lower.
Of the five seizures I reference in this post, two happened after playing sports. Because low symptoms are hard to isolate when exercising, I didn’t realize I was low until it was too late. Another happened at a friend’s house when I took (R) insulin waiting for pizza at a slumber party. I fell asleep before it arrived and no one knew I had taken insulin. The seizure I had in 2001 happened on an airplane, my first flight commercially. When I fly, the change in altitude causes my blood sugar to drop, but since it was my first flight, I learned that lesson the hard way. The other severe low happened at a friend’s house about three months before that flight. I woke up, felt low and went into the kitchen. My friend’s mother heard me, but when she walked into the kitchen, I was already in insulin shock. My activity, nor anything I had eaten the night before could explain the early-morning low. While this was the only “unexplained” seizure, I believe it was to help me later in life. My friend’s mother was also on that first plane ride with me. Because she was there for the seizure three months earlier, she knew what to do on the plane, and I never passed out. She was able to stop the seizure without using Glucagon. So I believe with all my heart, the seizure three months earlier at her home was a Godsend for what was to come. In the other cases, Glucagon was used, and I never required a hospital stay. I added this update around 2 p.m. on Nov. 8 to remind others that insulin shock is not a sign of poor diabetes control or management.