5-year-old Kycie Terry’s fight continues to be heard by thousands, even after her death on July 11.

On Saturday July 11, 2015, a post appeared on Facebook that shook the diabetes community and beyond. Five-year-old Kycie Terry, diagnosed with Type 1 diabetes less than six months ago, had passed away. It was the kind of news that you have to read twice and even a third time, hoping that somehow you’re misreading it. Back on January 30, Kycie had suffered severe brain damage after Type 1 diabetes went undiagnosed for roughly five days. Her doctor initially thought that she had strep throat and sent her home with antibiotics. Two days later, her blood sugar had reached 1,148 (normal is 80-120). She experienced seizures and became unresponsive after being life-flighted from a local ER to a better equipped children’s hospital. Doctors informed her parents, Josh and Jamie, that Kycie’s brain had herniated into the brain stem. If she survived, she would be severely handicapped. Little did anyone know how much fight was left in Kycie.

She opened her eyes and would spend a total of 111 days in the hospital, relearning everything from swallowing to sitting up. She could not speak and her parents longed to hear her first words again. Josh and Jamie began to share their daughter’s recovery via the Facebook page Kisses for Kycie, which has amassed over 54,000 followers since its creation. After Kycie was released from the hospital, the local community welcomed her home with a hero’s celebration, lining the street and holding up signs as Josh and Terry fought back tears of gratitude as they carried their daughter inside. Like so many others, I followed Kycie’s rehabilitation, her ups and downs, and her little triumphs that were anything but small, always amazed by her bravery and the courage of her parents.

Click here to view the embedded video.

Our immediate instinct is to ask why. How could God take someone so young? If only we could find a way to turn back the clock and warn them. After all, how could a doctor miss the diagnosis? The tragic truth is that it is not uncommon for Type 1 diabetes to go undiagnosed and be misdiagnosed. I know this because it happened to me. In 2004, after exhibiting extreme thirst, frequent urination, sudden weight loss, and changes to my vision (it temporarily went back to 20/20), I visited my family doctor. I told him that I looked my symptoms up online and thought that I might have diabetes. “First off,” he said, “you can’t believe what you read online, and I really doubt that you have diabetes.” Feeling slightly relieved, they drew blood at the office and sent it out to a lab. I asked if I should change my diet and eat less sugar in the meantime. “No,” he said. “Let’s wait until the bloodwork comes back. It’s unlikely you have diabetes.” A simple finger prick at the office would have shown a much different picture. Instead, like Kycie, they sent me home.

Over the next couple days, my symptoms worsened. My appetite increased and I began to crave sugar. I started to feel strange, lethargic, and at times my body felt like it was on the wrong wavelength, kind of like an appliance that is getting too much juice from an outlet. I don’t know how high my blood sugar got, but after hearing about stories like Kycie’s, I feel very lucky. The doctor’s office eventually called to inform me that the bloodwork indicated diabetes. I went back for another appointment. I then went to see a specialist, a doctor I later found out was on the verge of retiring. A nurse took me back to an exam room to wait. I could hear him down the hall in his office talking on the phone about his golf game. This went on for approximately twenty minutes and then he finally appeared. He wanted to do more blood work, but he was diagnosing it as Type 2 diabetes. He prescribed Metformin and sent me home. More days passed and then the additional blood work came back. The diagnosis was changed to Type 1 diabetes.

It’s been eleven years and the thought of the experience surrounding my diagnosis (or lack thereof) still infuriates me. I can remember the leave-it-to-the-experts smirk on my primary care physician’s face when I told him I tried to self-diagnose online, as if I had done something foolish. Yet, why wasn’t a simple finger prick done to test my blood sugar at the office when all of my symptoms pointed to diabetes? How could a “specialist” then look at a trim, healthy looking 27-year-old and make a diagnosis of Type 2 diabetes? Ultimately, why has there been such a lack of awareness, especially among doctors?

As these questions continue to frustrate me and many others in the diabetes community, there is one question whose answer has become clearer. Why Kycie? Why did she survive to fight for more than five months, only to be taken from this world? In trying to wrap my head around this, I thought about her more than 50,000 followers on Facebook and the thousands of others who likely saw their “likes,” comments, and “shares.” Then there are the many news articles that have been written about Kycie, and her YouTube videos that have amassed a total of several hundred thousand views and counting. In addition, television news broadcasts have shared Kycie’s story. I soon realized that Kycie Terry, a 5-year-old girl who never regained her speech, had likely been heard by more than a million people and will undoubtedly be heard by millions more.

Even though it’s hard to face at the moment, the purpose of Kycie’s life and her inspiring fight was already being revealed prior to her death, as evidenced by a July 5 Kisses for Kycie post.

“We just received our newest story from a mom of a recently diagnosed child. Her friend shared one of these awareness graphics 2 weeks ago, the mom saw these signs in her 15 yr old son, took him to the ER, and he tested at 600+ blood sugars.”

Click here to view the embedded video.

Type 1 Olympic cross-country skier Kris Freeman graces the February 2014 cover of Diabetes Forecast.

At age 19, the very same year that Kris Freeman was asked to join the U.S. Ski Team, he received the news that he could have let alter his future as a skier.  He was diagnosed with Type 1 diabetes.  The year was 2000 and by then Freeman had already been on a lifelong trajectory to become an Olympic skier.  His parents, who were both cross-country skiers themselves, pulled Kris behind them in a sled before he could even talk.  He competed in his first race by age 5 and by 19, he had competed at the junior world championships three times.

After his Type 1 diagnosis, Freeman says that although his dream of being an Olympic skier didn’t change, he was “very confused about what it all meant.”  He was becoming an adult and would be leaving home for the first time to train full-time with the U.S. Ski Team in Park City, Utah.  Being diagnosed with Type 1 diabetes was not the way Kris Freeman wanted to start his career as a professional cross-country skier.  He now began to question his body’s abilities.  Could he still compete at an Olympic level in an event that requires maximum endurance?  Could he push his body to its limits while still effectively managing his blood glucose?

“The way to not be terrified was to learn as much as I could about [diabetes],” says Freeman.  He began to study his body like a scientist, especially the way food, insulin and exercise affected his blood glucose. Over and over and over, he took to the treadmill to understand how anaerobic exercise affected his blood sugar.  He compared that to the effects of the less intense aerobic exercise.  The first would initially cause his blood sugar to soar, while the latter would have somewhat the opposite effect.  Kris’s discipline and self-education paid off.  He has won 15 national championships and placed fourth in the world championships twice.  Oh, and he’s also making his fourth trip to the Winter Olympics this year in Sochi.

Type 1 Olympic Skier Kris Freeman uses both an insulin pump and a continuous glucose monitor (CGM), and says that he tests his blood glucose three to four times a day on average.  Do to his training routines, he adjusts his insulin dosage on almost a daily basis.  Does Freeman now have perfect control of his diabetes at all times?  No, that wouldn’t be reality.  However, he says that he has only been severely hypoglycemic during a race twice.  Unfortunately, the last time was in 2010 at the Vancouver Winter Olympics.  It significantly affected his overall time in a competition, and in another event his coaches pulled him out, seeing how taxed his body had become.

Kris Freeman’s diabetes doesn’t keep him from striving for Olympic gold. Here, he trains with an OmniPod insulin pump attached to his arm.

Since then, Freeman has further adjusted his insulin levels during competition and is now at the top of his game.  He has also learned to take into account how the mere stress and adrenaline from being on a world stage can affect his blood glucose levels.  “I feel as confident as I ever have in my diabetes management,” says Freeman, who is ready to compete in the Winter Olympics in Sochi.

Type 1 diabetic Olympian Kris Freeman is an inspiration.  Hearing his story reminded me of what a good friend once told me immediately following my own diagnosis in 2004.  He said that to be on top of your diabetes, you have to learn as much as you can about it.  You need to become an expert, acquiring more knowledge than even your own doctors possess.  After all, most aren’t Type 1s themselves.  Like Kris Freeman, you have to approach the disease like a scientist conducting research.

While I have yet to fully embrace that advice to the extent I know I should, it’s what I believe will give me the chance to live a long and healthy life.  Stories like Kris Freeman’s are sometimes the motivation we need to step up our own game.

Google’s Glucose Sensing Contact Lens Prototype

Yesterday, my wife sent me an article about a contact lens that Google’s secret lab was working on. No, this lens doesn’t overlay a computer screen in your field of vision, nor does it provide a visual map of turn by turn directions as you walk down the street, pointing out the nearest coffee shop or ATM machine. No, this isn’t the next generation of Google Glass.  It’s arguably more life-changing than that, especially for diabetics.  Google’s diabetes contact lens or ‘smart’ contact lens contains a miniature glucose sensor embedded between two layers of soft contact lens material. The sensor is designed to measure glucose levels in tears. And thankfully, it doesn’t mean you have to cry all day in order to know where your blood sugar level is at.  No, you won’t have to spend your days watching Beaches or thinking of puppies being rescued.  The tears that lubricate your eye are enough for it to work, with prototypes being able to test glucose levels once per second.  I’ll admit, that’s way faster than I can test myself and it sounds less painful and much less of a hassle.

As with any news of this type, my excitement is always met with the stark realization that it could be years or even a decade or more until this would be in the hands of diabetics.  Not only does Google have a lot more development to do, telling the Wall Street Journal that “there’s still a lot more work to do to turn this technology into a system that people can use,” the harsh reality is that there are plenty of lobbyists in Washington who will be pushing back to delay this type of technology.  Why?  Because blood glucose test strips generate an enormous amount of money for major pharmaceutical companies and unless they develop similar products (which could violate Google’s patent), they’ll be doing everything they can to protect their profits, at the expense of diabetics like myself.  Still, it is only a matter of time before technology like Google’s diabetic contact lens makes it into our hands.  The demand for an easier way to test blood sugar has been staring researchers in the face for many years.

I’ve written about C8 Medisensors noninvasive CGM in the past, which used a beam of light to measure glucose levels in the interstitial fluid. However, much to my surprise, that company went under in the first half of 2013, less than a year after it had received CE Mark Approval for sale in the European Union (I discovered this after first trying to go to their website, which seemed to have suddenly vanished).

It’s sad to think that the biggest obstacles that often stand in the way of getting this type of technology into our hands are big business and big government.  Whenever government interferes with the natural actions of capitalism, whether it’s the FDA or some other overreaching regulatory committee, the people undoubtedly suffer.  When it takes years just to crawl through all of the government loopholes to get  new technology to market, it’s no wonder so many potential products never see the light of day.  The funding just runs out.  However, Google is no small company.  If anyone can get a technology such as a diabetes contact lens to see the light of day, it’s certainly them (read Google’s official blog post).  Perhaps it’s time I trade in my iPhone for a Google Android based phone.  Well, maybe not just yet, even though the future is once again looking a little brighter.  Thanks Google.

Be aware that sunburn can affect your blood sugar.

After doing a bit of research, I discovered that the simple answer is yes, sunburn can raise your blood sugar.  Since I’m usually pretty good about applying sunscreen, this was something that hasn’t happened often enough in the nine years that I’ve been a Type 1 diabetic for me to put two and two together.  However, since my blood sugar is now under much tighter control than it used to be, it’s easier to recognize any unexpected deviations.   Basically, what I discovered is that sunburn can stress your body and in turn raise your blood glucose just like other stresses to your body can.  As for how long you can expect your blood glucose to be elevated, some Type 1s have experienced elevated blood sugars for several days after the initial burn, likely depending in part on its severity.  I seem to have gotten mine under control within 24 hours, as it has stayed level since this afternoon.

The effects of sunburn on blood glucose should not have come as a surprise to me since the same thing happens when Type 1s get sick, which is another form of stress on the body.  Also, remember that while sunburn might eventually raise your blood sugar hours later, being out in the heat can have the opposite effect and lower your blood sugar.  Always drink plenty of water to avoid dehydration and make certain that you test your blood glucose often.

This JDRF ad sparked controversy but reveals a fact that needs to be known. 1 in 20 Type 1 Diabetics will die from hypoglycemia.

Several times a year I hear of severe hypoglycemia taking the life of another Type 1 diabetic.  Most of us are familiar with “Dead in Bed” syndrome, which is the term used to refer to severely low blood sugars taking the lives of children as they sleep.  Since these deaths almost always can be prevented with proper management of the disease, I set out to discover just how many Type 1s we’re losing every year, in particular due directly to severe hypoglycemia.  Sure, a far greater number of diabetics are passing away indirectly from complications brought on by years of mismanaged blood sugars, but given that I’ve landed in the ER twice since being diagnosed in 2004, I’ve grown curious as to how many Type 1s are dying directly from severely low blood sugars.

Finding an answer to this question proved to be far more difficult than I had imagined.  In fact, according to the Medtronic website (makers of my Revel Insulin Pump and CGM) and various other sources online, there is no official mortality rate for how many people die each year from hypoglycemia.  This is unfortunate news.  However, it is not due to mere ignorance.  The problem is that after death the body can still release glucose, thereby making it difficult to determine if the deceased had suffered a hypoglycemic incident at the time of death.

Although there is no official statistic for the number of Type 1 diabetes deaths per year from hypoglycemia, I did come across a staggering figure that the JDRF (Juvenile Diabetes Research Foundation) displayed in an ad back in November of 2011.  It states that 1 in 20 people with Type 1 Diabetes will die of low blood sugar.  This figure is based on a number of studies by researchers P.E. Cryer, T. Deckert and W.M.G. Turnbridge, in addition to the Diabetes Control and Complications Trial that ran from 1983-1993.  The JDRF ad itself displayed the photo of an eight-year-old Type 1 girl named Piper and was used to put pressure on the FDA to lay out a pathway to bring the artificial pancreas to market (a device that holds a great deal of promise for Type 1s, but also comes with a great deal of risk if it is not made to be foolproof).

The JDRF ad caused controversy among Type 1s, some of whom openly expressed their anger by calling the ad “sensational,” “painful,” and “unnecessary.”  I beg to disagree.  Regardless of what the JDRF’s intent was, knowing that statistic just might shock Type 1s enough that they do everything in their power not to be part of the 5% who don’t make it and rather join the 95% who do.

Pictured in its new packaging, Scot-Tussin is the diabetic cold and cough syrup that has worked for me.

The first time I got sick after developing diabetes in 2004, I was still living at home and I can remember my mom buying every type of diabetic cough medicine that she could find.  This included Diabetic Tussin, Sugar-Free Robitussin, Scot-Tussin and a slew of sugar-free cough drops.  Over the years, the one that has come to work the best for me is Scot-Tussin DM.

Scot-Tussin diabetes cold medicine is not loaded down with sugar alcohol, and although it warns that it may cause drowsiness, it does not knock me out like other non-diabetic and diabetic cough syrups on the market.  I’ve been using Scot-Tussin for over seven years now, including to help battle my recent sinus infection that I developed last week.  After struggling for two days with clogged sinuses that resulted in discomforting pressure in my face and head, my wife traveled to our local CVS Pharmacy to pick up a new bottle since our old one had expired.  Within 24 hours, the worst of the symptoms were gone and I was left with a bit of drainage that has taken five days or so to begin to subside, the infection having just about run its course.  During the final stages, I’m only taking Scot-Tussin before bed to prevent increased coughing while lying down.

We’ve only been able to locate Scot-Tussin (fully titled Scot-Tussin DM Maximum Strength Cough Suppressant & Cold Relief) at CVS Pharmacies.  As always, please study the labels before taking any new medication, as there are certain scenarios whereby the medicine may conflict with current medications you are taking, or may be inappropriate for consumption due to pregnancy, etc.

You can order Scot-Tussin online from CVS Pharmacy and it is also usually available in CVS stores.

C8 MediSensors’ nCGM approved for sale in Europe. The device sends readings to a smartphone.

A little over a year ago I first wrote about C8 MediSensors HG1-c noninvasive continuous glucose monitor (nCGM).  This week I received word from the company that their device, which uses light to measure glucose in the interstitial fluid, has gained CE Mark Approval for sale in the European Union.  European customers can reserve C8 MediSensors Optical Glucose Monitor System via the company’s website.  In June, Chief Financial Officer Fred Toney said that the company has raised $19 million for its European launch, bringing the investor total to $60 million.  Though most investors remain undisclosed, GE Capital and GE Healthcare, both divisions of General Electric Corp., have put money into the company.

After launching in Europe, the next step will be to begin the regulatory process with the U.S. Food and Drug Administration.  The FDA could prove to be a bit of a challenge, given its reputation for playing politics.  However, approval in Europe is the starting point that C8 MediSensors needed in order to get their noninvasive optical glucose monitor passed the FDA.  The device will sell for around $4,000, which is less than the cost of invasive continuous glucose monitors (CGMs).

A severely low blood sugar landed me in the ER one year ago today.

Prior to January 29, 2011, my approach to managing my Type 1 diabetes, at least with regard to my diet, pretty much fell in line with what was recommended by my doctor, which followed the current guidelines (or lack thereof) promoted by the American Diabetes Association (ADA). For example, in questioning my doctor about the foods I was eating, I once asked her, “Are there foods I should be avoiding completely?”

“No, as long as you inject the appropriate amount of insulin for what you are eating. Now, that doesn’t mean sit down and have five or six slices of pizza. You have to keep things within reason.”

To many Type 1 diabetics that advice may sound familiar. You are basically allowed to eat what you want as long as you shoot the correct amount of insulin for the corresponding amount of carbohydrates. Numerous Type 1 bloggers and parents of Type 1 children have devoted entire blog entries and message board posts to vehemently defending this position, often showing their disgust with an “uneducated” observer who suggests that they shouldn’t be eating certain foods.

“Should your daughter be eating that piece of birthday cake? I thought she had diabetes.”

“You have Type 1 diabetes? It must be hard to not be able to eat sweets.”

“Wow, diabetes must suck, you can’t eat anything good.”

“It’s unfortunate that your son has to live with that horrible disease.”

These are examples of the types of comments that have led to outrage among certain members of the Diabetes Online Community (DOC). Of course, prior to last year, I would have been frustrated by those comments as well. I had been giving myself insulin injections at least five times a day and pricking my fingers more than that, yet I was trying to live like I was normal. I was trying to live like I didn’t have a disease. After all, medical advancements have given us insulin. We’re not living in the dark ages anymore. The main difference between me and a non-Type 1 diabetic is that they have a working pancreas and I have to shoot insulin before meals, right? That means I can still be normal, doesn’t it?

If you traverse the posts of many of those same defensive bloggers, you’ll notice that they also suffer from complications that include nerve damage, retina damage and more. Ten years down the road (or less), with the same attitude, I imagine this blog would read much like theirs, a handful of well-intended posts speckled with the evidence of emerging complications and growing frustration. And as I would be left wondering what I did wrong, my endocrinologist would likely continue to tell me that my A1C was in a good range for being a Type 1, and reading countless issues of the ADA’s Diabetes Forecast magazine (dubbed “The Healthy Living Magazine”) would ensure me that my diet was appropriate. All the while, this same advice would be slowly killing me, like it has been doing to Type 1 diabetics for decades now.

In my opinion, the most important thing that I’ve learned over that past year is that ARTIFICIAL INSULIN CANNOT MIMIC EXACTLY A WORKING PANCREAS. What does this mean? It means that believing the all too common misconception, even among healthcare professionals, that injected insulin can adequately cover meals with either large amounts of carbohydrate or fast-acting carbohydrate, is only guaranteeing us a slow, incremental, “silent” death from the devastation of diabetic complications. In simpler terms, THERE ARE FOODS THAT TYPE 1 DIABETICS SHOULD NOT BE EATING. Dr. Richard K. Bernstein, himself a Type 1 diabetic, makes the following crucial point, “Injected insulin – even with an insulin pump – doesn’t work the same as insulin created naturally in the body.” Even with its Dual Wave Boluses, etc. that release an insulin dose in installments over time instead of all at once, an insulin pump cannot prevent the ravaging spikes that occur after consuming foods containing fast acting carbohydrate or heavy amounts of carbohydrate. In an attempt to follow Dr. Bernstein’s recommended diet, I have given up breads, pasta, cereal and flour-based desserts like cake, pie, etc., to name a few of the foods I now completely avoid.

As a result, I have lowered my A1C and have managed to mostly avoid drastic swings in my blood sugar, resulting in my doctor’s office to comment that they have never seen such steady blood sugar levels on a CGM (Continuous Glucose Monitor) graph. Despite these positive steps, I still have a lot of work to do in managing my Type 1 diabetes. I want to exercise more regularly, if not daily. I need to eat smaller meals but more often, which will help me to better manage the carbohydrates that I’m consuming at each sitting. I need to stop cheating here and there by having two bites of this or a couple tastes of that. Doing so during meals only complicates the amount of insulin I need for the entire meal. For example, if French fries come on a salad at a restaurant, I’m often tempted to have a few, despite picking the rest off.

TYPE 1 DIABETES IS A DISEASE. I AM NOT NORMAL, NO MATTER HOW MUCH I WANT TO LIVE LIKE I AM, ESPECIALLY WITH REGARD TO MY DIET. To quote poet Charles Bauldelaire (as well as a certain 1996 film), “The greatest trick the devil ever pulled was convincing the world he did not exist.” In many ways, this reminds me of diabetes. Most days it doesn’t readily show its face. It often lingers in the darkness, waiting years, potentially decades, before it reveals its most damaging effects. I know that truly accepting my disease, educating myself with right knowledge, and acting on that knowledge every day of my life is the only way that I have any chance at beating this to live a long, healthy life. It surprises me that there are those out there who don’t believe that this is possible. Some have accepted diabetes more as a boulder crashing through their lives instead of a curve ball that they can still swing at. For nearly all Type 1 diabetics, to swing or not to swing is all a matter of having the will to make the right choice, despite how difficult it is.

According to the FDA, computer glitches, device problems and issues with the insulin used have kept them from moving forward. The FDA has approved more than 20 clinical studies surrounding the artificial pancreas. Until now, the approval of these studies has perhaps been the most positive development in seeing that the device gets into the hands of the three million Americans suffering from type 1 diabetes.

What prompted the FDA to offer its approval guidelines for the device? In early November, the JDRF (Juvenile Diabetes Research Foundation), along with health professionals and lawmakers, including Senator Susan Collins (R-ME) who is the co-chair of the Senate Diabetes Caucus, went to Washington, D.C. to urge the FDA to take the necessary action to see that the device becomes a reality.

If you are not familiar with what exactly an artificial pancreas is, it is not an internal device. Like an insulin pump, it is a portable device that closes the loop between blood sugar testing and insulin delivery (or suspension). The artificial pancreas reacts to a patient’s current blood sugar levels and adjusts insulin delivery as needed.