Inside the Patient Entrepreneur’s Mind: John Wilcox

Managing a chronic illness is challenging, whether it is your own or a loved one’s. Starting and running a business also poses unique challenges. If you struggle with a chronic illness, have started a business, or want to start a business, this blog series can help guide you. “Inside the Patient Entrepreneur’s Mind” offers key insights into chronic disease and mission-driven entrepreneurship by some of the most innovative patient entrepreneurs in the world. 

John Wilcox is the CEO & Co-Founder of Diatech Diabetic Technologies, Inc. 

As a patient entrepreneur, can you describe your personal experience with diabetes from diagnosis through your current daily management and how this experience drove you to innovate the space? 

In 2005, I was diagnosed on my ninth birthday. I figured the only way to come out on top was to make it a positive experience. Growing up, I really identified with the disease and now use it as an opportunity to empathize with others with chronic disease. I wanted to go to medical school, and still might, but this opportunity came up in college to develop intellectual property—what is SmartFusion today.

I took on the business full-time post college graduation of May 2019. My diagnosis gives me a leg up on how to develop technology to help diabetes patients. As a collective community, we can appreciate when someone with a disease can relate to us and effectively create change. My condition is something that I can share and allows me to connect to people and understand how other people are struggling—it is one of the best gifts that I could ever ask for. I don’t know what I would do with my career without this diagnosis because it has turned into a passion to help others and a lesson on how to make the best of situations.

What makes SmartFusion unique and how does it meet an unmet need of the diabetes community?

SmartFusion is a new infusion set that can more accurately tell you if insulin delivery is actually getting into your body. SmartFusion is unique in the fact that it helps patients understand if they are getting insulin.  Insulin pumps on the market right now are not really meeting the standard of being able to tell patient users if their insulin delivery is effectively working. We noticed the issue of infusion set insulin delivery failures where pumps can have issues with insulin delivery efficacy.

Personally, I have had issues going into DKA because of insulin mis-delivery.  I went to an endocrinologist in college who blamed me for poor A1C control rather than it being a technology/pump failure. I want to provide technology that can deliver alerts before hyperglycemia because it happened to me and it is very dangerous. Fixing this unmet need of pump reliability can take one thing off the list of what patients and caregivers go through regarding issues with diabetes care.

Are there any other unmet needs of the diabetes community that you think take priority in working to address? How are patient entrepreneurs well-suited to meet these needs? 

In the future, I would love to focus on software for pumps. There has been great work on hardware that is safe and effective for patients with diabetes but a real gamechanger could be software that pairs any type of CGM with any type of pump. The diabetes “hacker” community is already pairing their own CGMs with pumps but are not following standards of the industry.

Additionally, there is a lot that needs to be addressed in education, especially how to learn to effectively use diabetes technology for parents of children with the disease.

Where do you draw your inspiration and motivation from to keep forging ahead as an entrepreneur in the healthcare industry?

 My inspiration and motivation comes from talking to people who have the condition. I want to make sure the diabetes community is affected and impacted in a positive way. Stories from patients about issues with diabetes care like insulin mis-delivery keep me up at night.

Lastly, what do you do for fun to manage the stress of running a business as both a person with t1d and an entrepreneur? Do you have any similar advice on work-life-disease management balance to others out there thinking of starting a business to meet an unmet need of a chronic disease patient community?

I love to run whenever I can and I find it a very clearing activity. My goal is to John Wilcox 5k racerun the Boston marathon for the JDRF. In terms of advice for other patient entrepreneurs, we have a disease that can help connect us to other people that have the same chronic illness. However, each patient story is unique so taking the time to recognize that is important. For example, my parents helped me get appropriate care at a young age by providing insurance coverage. How dare I compare my journey to patients I meet now, who are in their twenties, who are still without coverage to get insulin. In a nutshell, know that your story is unique and craft a connection to fellow patients based on that fact.

 

 

New Workout App for People With Diabetes – And Christel is an Instructor!

Have you ever dreamt of working out with a trainer who understands diabetes, who might even live with diabetes, and who gets what it takes to get through a workout without wonky blood sugars?

Well, that trainer could be me!

Today, my 12-week fitness program “STRONGER”, that I developed for GlucoseZone, is available in the GlucoseZone app. I’d like to personally invite you to come train with me. To join me for a program that will push you to be a stronger version of yourself.

Sign up HERE and use the “STRONGER” code to get 30% off your monthly subscription

The beauty of joining GlucoseZone is that you’ll get access to not only my program but to 6 other exercise programs, as well as live workouts, all developed specifically for people living with diabetes. You can do all of the workouts in your own home or bring it to the gym.

Regardless of your fitness level, you can find qualified instructors to take you through the workouts that are right for you, and always with your diabetes in mind.

One of the reasons why I’m so excited about working with GlucoseZone is that it’s the first-ever clinically validated digital exercise therapeutic for people living with diabetes, and it’s endorsed by the American Diabetes Association.

Stronger Getting Started

Sign up HERE and use the “STRONGER” code to get 30% off the monthly retail (You’ll only pay $9.09 per month) when you sign up for the GlucoseZone app.

 

Connect with Christel on Facebook: @DiabetesStrong; Instagram: @diabetesstrong_ig.

Wearing a Diabetes Medical ID On-The-Go!

Medical ID Bracelets

Living life on-the-go can be fun and busy, however, doing so with a chronic illness requires a few extra steps and planning along the way.

 

Hi, my name is David and I have been living with Type 1 Diabetes for 10 years now. I was diagnosed at the age of 11 and let me tell you… I have been through a lot. In living with this disease, I have been able to experience so much and learn from my mistakes. In doing so, I have come to realize that as a diabetic, I am one of those who should wear a medical ID and why it’s important for all life’s experiences.

For years on end, I never wore a medical ID bracelet. I could never find a bracelet that I simply liked or wanted to wear daily. When I became a part of the Diabetic Online Community (DOC) back in 2014, I was exposed to several different people who shared the same struggle. I also saw a variety of amazing brands and companies who understand this struggle and have found ways to make ID bracelets, dog tags, necklaces, and more so much nicer and pleasing to the eye and the patient. I own several different medical ID bracelets, I think when one finds their style with Diabetes, it’s always nice to have options and create your own look, which is why owning multiple forms of emergency ID that go with different looks is a great idea!

I have mentioned several times on my Instagram, @type1livabetic, that when wearing my personalized Paracord bracelet from American Medical ID, I felt so very safe. I felt as though if anything Diabetes related could go wrong, I would be prepared. On my engraved bracelet, my name, condition, and emergency contact information were all located on a small piece of metal, attached to the Paracord bracelet. At a recent trip to Disneyland with a large group of people who also had Type 1 Diabetes that could vouch for me if there were to be an emergency, I still encountered times in which I was alone at the park (walking to and from my car, walking to meet the attendees, or simply stepping to the side to grab a snack), rest assured, I was confident with my Diabetes at the time.

So why is it so important to wear a form of medical alert jewelry for Diabetes? Well, not to get too dark or technical, however, the fact remains that we do have Type 1 Diabetes that does come with some symptoms and consequences. If our blood sugar drops significantly low, we could pass out and become unconscious or go into a coma. Same with high blood sugar, if we are severely high and go into DKA, we could in fact experience some symptoms that could limit our ability to function, which can prevent us from acting in the moment to get help. Say you were in public, alone, and you experienced one of these symptoms, if you were wearing a medical ID, someone nearby would mostly likely come to check for various hints or signs on you if something doesn’t look entirely right and search for an alert jewelry in particular sites on the body: wrists, around the neck, tattoos, etc.

In being diagnosed with any chronic disease and being told you have to take extra care of yourself can be a lot, however, allowing yourself some relief by wearing a form of ID can truly reduce a lot of the stress surrounded by various diseases. One should never leave the house without some form of ID as you never know when these emergencies could happen.

American Medical ID Healthy Packing List

The CDC includes having a form of medical identification such as alert bracelets, necklaces, or wallet cards as part of a healthy travel packing list.

I believe that some may also feel safe in knowing that they have a medical ID card in their wallet as well, for added peace of mind. One should also wear a form of ID at home, just in case. For those who live alone, I understand that it may feel as though you are not in need of wearing an ID at home as you will be alone, but that could just be the very tool that can keep you alive, say you have an emergency, it could be that neighbor walking by and seeing something isn’t right that could barge in and save your life and being able to identify you have a particular medical condition that needs attention.

We each have our own busy lives that takes up so much time and mental focus away from our health, which is why wearing medical alert jewelry can protect us as we are on the move, daily. School, work, the playground, a coffeeshop, wherever you may be, ID is necessary. No matter how old the patient is, whether a child, teen, adult, or elder, wearing a medical ID all the time can protect us from the dangers of our diseases and more.

 

Live well,

David

To End The Weekend In A Perfect Way

The human body is an incredible thing. Yes, it can fall apart and let you down, but it also holds amazing minds that dream up things like insulin and glucose pills that can save someone’s life and help you work around the parts of your body that can’t keep up anymore.

Weight isn’t everything — health is. I grew up battling an eating disorder and now that my focus is on health, and not weight, I feel much more connected to my body. It’s like meeting an old friend I haven’t talked to in a long time (and we have a lot to catch up on). Having to count, track and balance every bit of food or drink that goes in my body is definitely a trigger for me, but I’m getting to know what food makes my body healthy now.

It’s okay to be sad and let go.

There is no perfect health zone. There will be days when I can’t “beat” diabetes no matter what and there will be days when I need to treat myself and not focus on only eating things I know I can control well. Life needs little moments like that to stay sane and right now, the only path to staying happy I can see is one that embraces ups and downs and doesn’t try to turn them into a perfect straight road.

Last and most importantly: LIFE CHANGES. It is important to remember. Life looks and will not look the same even though we have a disease that will need the same type of treatment.

THE MORNING SUGAR: A Window into your Type One Management

I lie in bed with one eye open, ears still ringing from my poorly selected, overplayed alarm tone. I sit half hunched over my glucose monitor attempting the first blood-drop-to-test-strip co-ordination of the day. Its 05h30, I have fasted for 6 to 8 hours, it’s time to dive into diabetes. My test strip sucks up the drop of blood and counts down to my first glucose reading of the day:

BEEP: 4.6mmol/l (84)

OR

BEEP: 9.6mmol/l (173)

OR

BEEP 16.6mmol/l (299)

The good, the average and the ugly.
These are the 3 general ranges of readings that might greet me at the first finger prick of the day. It’s only one of the many sugar readings that lie ahead, but it is a special one to pay attention to, as your morning glucose reading can provide important insight into your diabetes control.

A fasted reading has a myriad of information which you can choose to ignore, or preferably dissect and investigate for optimum diabetes control. I believe it is vital to ask myself why? Why is my blood glucose this level and what were my preceding actions?

I will take you through my 3 ranges and my general approach to morning sugar readings and how I personally troubleshoot these readings. We each tackle diabetes differently, but hopefully the following brings some insight into your morning sugars or encourages you think critically of those interesting rise and shine numbers!

The “Gem”
My personal values are 3.8-5.6mmol/l

Oh this is a sweet, gem of a reading. It’s the real “roll out of bed on the right side” number.
Perfectly in range, it is still important to acknowledge the formula that achieved this number. We could all do with a little positive reinforcement and mindfully recognize and enjoy our diabetes successes! I always ask myself, “What did I do well?”

This sugar reading generally informs me that I have correctly dosed my long acting insulin as it did not bring me into the clutch of hypoglycaemia when fasting during my sleep. It was also sufficient to meet the cascade of morning hormones such as cortisol and hyperglycaemia it brings along with it. This sugar happily greets me when I don’t snack after dinner and I eat around 3 hours before bed-time. This plan allows for an honest, stable blood sugar reading before bed where my injected insulin has already peaked in activity, and I can expect predictable glucose readings as I sleep.

The “Meh”
My personal values are 6-9mmol/l

It’s a sugar range that is higher than I would like for a fasting blood glucose level, but it’s not remotely the end of the world. To solve this morning glucose and to prevent it creeping higher, I have my insulin dosage for my breakfast plus a dash more insulin to correct. I wait 20-30 minutes for my insulin to start working and bring my glucose down before having my breakfast. I ask my “why?” and make a mental note of how I could improve and act accordingly. If went to bed with a great blood glucose level and I woke up high, it could be various things:

1. Insufficient long-acting insulin: The Dawn phenomenon

When I have my continuous glucose monitor (CGM), the Dexcom, attached, this will be displayed as a nice steady graph with readings in glucose range for the first 2/3rds of sleep, only to find in the few hours before waking my blood glucose slowly and steadily increases. This is due to the get-up-and-go hormones that pump through your body to prepare you for waking and tackling the day. These sneaky buggers include growth hormones, cortisol, glucagon and epinephrine and they increase your insulin resistance, causing blood sugar to rise.

2. Too much insulin: The Somogyi effect

This is an interesting stress response of your body, a rebound effect of low blood glucose while sleeping. If you have too much insulin, long acting or short acting, and you experience a low while sleeping your body mounts a survival response and encourages your body to release sugar back into your blood via adrenaline and cortisol. This low may not be rapid or severe enough to cause a seizure, but sufficient to mount a physiological survival response from your body.

3. Not enough short-acting insulin

This is usually prompted by snacking before bed and eating late. My stomach is still full and has not emptied. My blood sugar will be in range when I get to sleep, but as my tummy works to digest my food, sugar trickles into my blood which I thought I had sufficiently covered by my short-acting. This especially occurs if I eat meals that have a carbohydrate, protein and high fat content. It has even been dubbed “The Pizza Effect”, where fats and protein delay the absorption of carbohydrates from a meal. The most challenging part is that you don’t know when the carbohydrates are going to be dumped into your bloodstream as sugar. It could be more than 5 hours until you feel the true effect of your meal. This could also be a reason for a really high morning blood glucose reading, the one where you would rather turn over and head back to sleep, which brings me to my final morning range, which I like to call the “Lie in Bed for a Few Minutes in Denial”.

The “Lie in Bed for a Few Minutes in Denial”
My personal values are anything double digit

The “Man, I messed up” feels. I most likely did not give myself enough insulin for the previous night’s meal, or I ate complete rubbish, did a massive carbohydrate count guestimate (that’s right folks- guess and estimate can really be combined into one perfect word), it could be “the pizza effect”, or I forgot my long acting insulin.

The alternative explanation is that I woke up with low in the middle of the night and quite passionately, dove into my bedside glucose stash, bathed myself in sugar before falling back asleep in a pile a sweet wrappers. (Yes, I have awoken with gummy sweets melted into my back and bed sheet).

If my sugars are really bad in the morning, there is usually a pretty grand, blatantly obvious reason as to why they are absolutely deranged. I find myself glancing in the mirror, at my poor, hard-done-by face to ask myself why? My expression smirks, “Oh girl, you know why. You know.”

This is where the power of the mind can transform your day. You can switch to victim. You can choose guilt and actively bring yourself down. You can choose to let a number on a plastic monitor define your day or you can free yourself from mental binds, for you are capable, you are strong and you are going to tackle the day.

My go-to plan of action:

1. Massive bottle of water with loads of top ups
2. Small simple, low sugar breakfast (I find waiting for my sugars to come down before eating leaves me more frantic and stressed)
3. More water
4. Add Insulin
Tip: Don’t give yourself 70000 units because you are panicking and desperately want your sugar to go down as quickly as possible (TRACY SANDERS I am talking to you girl). A resultant severe hypoglycaemia does not make it easier to improve the day.
5. Forgive yourself, give thanks to your body for all the other goodness it brings to you and power forward.

Transform your WHY’s into WISE, pay attention to each nugget of information your body and glucometer communicates to you. By building up an understanding of your sugars, you build a stronger relationship with your body and mind. Work closely with your support network, endocrinologist and diabetes educator to make the correct adjustments to suite your body, always ask questions and challenge your knowledge and experience of type one.

Real Talk with Dave: The Lifesavers of Type 1 Diabetes

Over time, there have been several breakthroughs in medical technology that have made living with Type 1 Diabetes almost a breeze! From Insulin Pumps to Continuous Glucose Monitors (CGMs), these devices have made the battle of blood sugar regulation so much more bearable and practical in living life on the go. We’ve all seen them and most of us even own these devices, but I’m pretty sure we can all agree that they have made living with Type 1 way less stressful. Going to school, work, and even on vacations just got a whole lot easier!

When the idea first comes to a newly diagnosed patient about getting an Insulin Pump, for example, it may seem scary to have a device attached to them 24/7, but give it a week or two and most of the time, people sure fall in love with them. I can’t express how much I love wearing a Pump and Dexcom sensor, they have made my crazy schedule as a student so much more manageable than before when I used to take Insulin injections before every meal and having to rely on finger sticks alone, not knowing which direction my blood sugars were actually going in. They have definitely given me peace of mind in which I no longer have to worry about going low or high in class, at work, or even as I’m driving around town, as I am always in the know of what is going on with my blood sugars thanks to my CGM. If I go out to eat with friends, for example, it has become very convenient to quickly enter in how many carbs I’m eating into my Pump and I let the insulin drip in me as I enjoy quality time with some very special people.

There is always the fear of a Pump site ripping out or having it scrubbed off in the shower, but no need to worry, these sites we wear are just like bandaids (that give Insulin and monitor blood sugars!), so if they do come off, the pain is usually little and is very easy to re-apply a new site! I can remember countless times in which I have had sites come loose in the pool or shower, ripped off for no apparent reason, and even once I was playing with my dog and he accidentally knocked my Dexcom right off my arm (no worries, Comet!), but it just takes a few little incidences like these to help prepare us for the worst. Now a days, there are so many different medical tapes and glues that can help keep our sites on for the 3-7 days of wearing them. There are now a variety of companies, such as @PumpPeelz and @GrifGrips, who are aware of the struggles of keeping our sites on, that they have created fun patches with some really cool designs, allowing us Diabetics to show our style and decorate Diabetes!

In all seriousness, however, Diabetes is a full time job that requires around-the-clock care and attention, so having these so called “lifesavers” is so convenient and helpful to us in the long run as they assist us in living our best life with T1D. They can be the very devices we need to help us in an emergency of knowing what our blood sugars are and giving ourselves Insulin if needed. Diabetes is tough, but with these incredible medical breakthroughs that we’ve all been blessed with, the game of Type 1 Diabetes has been changed for the better and has allowed us to keep on fighting! Not only have they helped us, the Diabetics, but they have also helped parents, teachers, roommates, etc. as they too are given the peace of mind that we are just fine, as T1D can be a mess sometimes, thankfully though, we have these devices to help us all out!

So go ahead, live your best life and don’t look back, unless you forgot your Insulin Pump or CGM, then you should definitely look back and go get them!

Live well,

Dave

The Problem With Diabetes Education in Brazil

I’m here to talk about the Diabetes educational problems in Brazil. We have a lot!

For starters, if you have the money or good contacts, you are safe because you’re going to have the best doctors ever and they’ll tell you everything new that comes up about Diabetes treatment. But, if you don’t, I’m sorry to say but you are completely alone in this journey.

 

We know that there are more poor people than rich people in every country, and here in Brazil, it’s the same. Those who depend on a public health system tend to have a hard time to get good treatment, or getting updated on new thing happening around the world. We also don’t have enough qualified doctors in the public health system. Sometimes a cardiologist will even treat you and diagnose you with Diabetes!

We also don’t have enough qualified doctors in the public health system. Sometimes a cardiologist will even treat you and diagnose you with Diabetes!

I also need to talk about the horrible insulins that are given here. We still use NPH and regular insulin (old insulins). We’ve recently won the right to receive on SUS (public health system) better insulins, but who knows when they’ll start the distribution. As the public health system doctors don’t know much about Diabetes, they cannot give the support that Type 1 diabetics really need, and I frequently see T1Ds being diagnosed by mistake as T2D. This is very serious.

 

Did you know only 10% of T1Ds in Brazil have an hb1ac below 7? And those who live with an hv1ac higher than 7 think that Diabetes is a monster and that it is ok to have complications! Did they ever read about the DCCT study? I don’t think so.

I don’t even need to talk about knowledge in insulin pumps, right? Only 4% of diabetics in Brazil use this type of treatment here. Most of them don’t even know that it exists!

 

If we want better treatments we need to search on the web, or ask the best (usually most expensive) doctors for information. For example, here in Brazil we can ask for a better insulin and even for an insulin pump with CGM in a lawsuit against the government. We just need to prove that we can’t afford it. And we receive all the supplies monthly. Not everyone knows about this, but they SHOULD.

 

My work at Biabética is to give this kind of information to those who don’t have it. I talk about new treatments, what to eat in case of a hypoglycemia, what to do if an infusion site is bent, etc. I share my life with diabetes and my knowledge (everything my doctor taught me) with love. My goal is to get at least 50% of the population diagnosed with T1D in Brazil to use an insulin pump.

 

I hope things get better for us, Brazilians, soon!

Real Talk With Dave: Surviving Summer and Type 1, with all the Highs and Lows

Summer time is a fun time when we all kick back and relax. Some go to the beach, chill by the pool, or go on a tropical vacation. Though as a Diabetic, there is one thing that interrupts you having the time of your life in the summertime, and that is this (not so) little thing called Diabetes. Type 1 Diabetes should not stop you from having a blast this summer and neither should it restrict the types of activities you do and places you go. Though there are some things to look out for so you can have the best summer ever, no matter what!

First? Insulin. Being the number one thing that you actually need as a Diabetic, it has to be cared for like no other. If your Insulin is sitting around in the blazing sun, it will go bad and will no longer be safe or effective for use, so always keep your Insulin in a cool setting such as a refrigerator or in a cooling pack. Same goes for your blood glucometer and insulin pump, as if they get too hot, they will not work until they cool down a bit. I would highly recommend having a backup blood sugar meter and a set of syringes, along with a vial of insulin, just in case your pump and meter overheat. When I was first diagnosed with Type 1, I remember how during the hot summer months, my blood glucometer would overheat, so I would stick it in the fridge to cool down faster, as funny as that may have seemed.

Always keep your Insulin in a cool setting such as a refrigerator or in a cooling pack

I have had days when I was out all day by the pool and left my pump on the side of the pool, which apparently made the insulin cartridge become warm, so when I went to take my insulin I found my blood sugars going high due to the insulin going bad in the heat. It’s all a learning process in which you have to go through some tough experiences (like your blood sugar going high or your meter breaking down) to learn how to plan for the worst.

As for blood sugar regulation, when the weather outside is blazing hot, that tends to make your blood sugar go high and stay that way until you cool down. My advice, based on personal experiences, is to stay cool and in the shade as much as possible. Always keep an eye out on your blood sugars as the day goes by just to make sure they are in range. Most importantly, drink plenty of water. I cannot stress enough how helpful water is on a hot summer day. If you do tend to go higher in the summertime, as everybody reacts differently, try these tips and tricks to avoid annoying Diabetic issues and spend more time out by the pool or chilling at the beach!

Going on a tropical getaway can also be fun and exciting, but remember to have a checklist of all the Diabetic supplies you’ll need to avoid any problems. It wouldn’t hurt to take extra supplies as well, just in case. Once, a few years back, my family and I took an amazing trip to Hawaii and I remember being so excited! However, the beginning of that trip was not fun at all as I had forgotten my Insulin back at home in California. Luckily, I had just changed my pump site the night before our flight and filled the vial of Insulin, which lasted me three days so I wasn’t completely out of Insulin.

It was a very stressful situation though. I was feeling like I failed myself and ruined the trip. Thanks to my amazing parents, who did everything they could to get me my insulin, there was a new order ready for pickup at the pharmacy in Hawaii as soon as we landed. Once I was reunited with some fresh Insulin, I truly was in paradise! Like I said, we need experiences like this to go through and learn from so that we can know how to handle practically any situation life may throw at us. Since that trip, I learned to NEVER forget my insulin at home and to always put that as number one on my list for all my Diabetic travel supplies.

So remember to stay cool, stay hydrated, and stay prepared to take on this hot summer! Enjoy it to the fullest and do what you love! Swim, surf, travel, you name it, because even with T1D, you can do literally anything you put your mind to!

Live well,

Dave

Real Talk With Dave: Loving Your Numbers!

As a Type 1 Diabetic of 9 years, I have had certain time frames in which my numbers were wonderful, and times in which I just could not gain control over them.

Most Type 1 Diabetics are diagnosed at a very young age, which makes it a bit more difficult to gain control over their blood sugars as they are, in reality, kids who just want to be kids. This disease takes a certain part away from you, and most T1D patients hardly remember a childhood without Diabetes. Wanting to go out with friends, sports teams, or on field trips make it hard to stick to a day to day regimen and diet, which then causes blood sugars to spike up and crash from time to time. At some point (and we each discover that point in our lives at a different rate), we need to find a common ground between living and loving our numbers. It can be tough, time consuming, and overwhelming to have to figure out what works out for each individual person and the way their body reacts to certain things, but at one point in time, your numbers will cooperate if you set your mind to healthy living.

What it takes is self-discipline.

Just a few weeks of training your mind to carefully watch your numbers as they change throughout the day (maybe by monitoring them on a continuous glucose monitor (CGM)), sticking to a healthy diet consisting of different nutrients that are beneficial to a person with T1D, and figuring out what truly works best for you can be all you will need in finding happiness with your numbers. I’m not saying you have to give up your favorite dessert or be on a strict health plan in order to work towards those better numbers. What I am saying is that in moderation, anything can be done. I for one can not give up my favorite food (sushi), which can be very high in carbs and tricky to calculate how many carbs I am eating, so that is what I may call a “cheat meal” in which I accept that fact that my numbers may go a bit higher than usual, actually much higher than usual, but I am able to let it slide.

Us Diabetics work hard each day just to stay alive, so every now and then, it’s okay to have a day where we eat what we want and however much we want

…just as long as you do get back in the zone of those great numbers.

I can remember countless times in which I would have a determined mindset which allowed me to gain the numbers I wanted, but then there were also times in which I simply did not care about my numbers, diet, or exercise plan, but you know what? That is absolutely okay. We all go through a burn-out period and it does get in our minds and makes us think we are failing on our bodies, but we just need to find out what inspires us to pick ourselves back up and start over again.

Something that helps me is that if one day is really tough and I just cannot seem to get one good blood sugar reading that day, I tell myself how it’s okay to continue the rest of the day with not so good blood sugars, as safely as possible, just as long as the next day, I start fresh and new and treat it as a blank page in a notebook, allowing me to make better choices and plan ahead for the day and what I want it to look like. Highs and lows come from a number of different causes, such as different foods, exercise, stress, and sickness, etc. That is why as much as we try to gain the control we need, some days just get the best of us and don’t allow us to truly live. But we are human. We get sick. We get stressed out. We are active. So as hard as we try, it may not work out the way we intended it to work out, but again, that is absolutely OKAY.

Nobody is perfect.

There are no Diabetics out there who have mastered T1D completely as this disease is aggressive and doesn’t care how long you’ve had Diabetes for.

It is not an easy thing to get right away, but eventually, accumulating as many “good” days as possible makes it easier to overlook the bad days. Days will pass in which you may feel like giving up, but you have to remember who you are here on earth for: your parents, friends, family, and ultimately, yourself. The better the numbers, the better (and longer) the life you will be able to live.

So go ahead, work towards those amazing blood sugars that you are capable of!

Live well,

Dave

Beating Diabetes

Diabetes is a tough disease to live with – I know this first hand. I was diagnosed with Type 1 Diabetes (T1D) the summer I was turning 17, and it changed my life. At the time I was a competitive athlete, playing tennis on the Swedish National Team, and an excellent student. Nothing had prepared me for this diagnosis. We did not have diabetes in our family, and I had no friends with the disease. I saw it as a defect and a failure. It became something I would hide from everyone for many years.

Almost twenty years later, I received MD and PhD degrees from the Karolinska Institute, a post doc at Harvard, and worked on Wall street. I had taken a company public on NASDAQ and become a partner at a Venture Capital Fund, but I was really not feeling well. The spring of 2007, 18 years after my diagnosis, my kidneys and eyes were failing, my blood pressure was uncontrollably high and my hemoglobin was so low that I required blood transfusions. What happened? Well, diabetes had slowly but surely destroyed my system, and was on its way to take my life.

This was when I realized that I cannot hide my condition, and that the treatments on the market are not good enough – there must be a better way.

Fast forward 10 years, I had now been the head of Metabolic Strategy at JNJ, had a senior role in the world’s largest diabetes foundation, JDRF, and had run clinical trials in diabetes for a biotech company that I had helped take public. Most importantly, I had gone through two transplants and received a pacemaker. The pacemaker was placed due to repeated fainting episodes that would happen inconveniently, and often risked major injury and even death. Before the pacemaker, my heart would just stop because of diabetes nerve damage and complete body fatigue from all the injuries I had endured. I was also given a kidney from my father that saved my life, and a pancreas transplant from a deceased donor. I finally had a new chance to make life worth living again.

It is 2017. I am a strong, happy and very determined woman; but I am far from done. My company, Lyfebulb, is here to make a difference and I will not give up until we have accomplished our goals.

Diabetes is not a lifestyle disease.

It is a disease that slowly but surely kills, cripples and debilitates. I wish it were cured and abolished from our planet but in the meantime we need to address it much more aggressively.

Our current landscape of companies is driven by a few very large ones that have provided patients with the life-saving drug, insulin, since its discovery in 1921. These companies, namely US-based Eli Lilly, Danish Novo Nordisk and French/German Sanofi, are enormously dedicated to diabetes, patients and to research. The developments over the years included using insulin used derived from pigs and cows that was modified by the addition of zinc in the 60s to influence the absorption of insulin. Then, in 1977 Herbert Boyer of Genentech developed the first engineered insulin, so-called “human insulin”, and in 1982, Eli Lilly did a deal with Genentech and started selling Humulin. Insulin analogs were introduced in 1996 and 2001, which triggered higher pricing for the products, although marginal improvements in diabetes measurements such as long-term glucose control (HbA1c) were achieved. The price of insulin rose by a multiple of 25 from the 70’s to 1996, and in 2001 the price increase had risen to 35 times that of bovine insulin. At this point, Lilly owned the US market with an 85% share, and Novo Nordisk was mostly successful in Europe. What happened in the past 10 years is remarkable. The insulin market has tripled, currently being in excess of $30B, from $7B in 2006, and predicted to approach $45B in 2021.  The insulin market is currently one of the largest therapeutic markets in the pharma world, and before its patent expiry, Lantus (Sanofi) was among the  World’s 5 largest drugs by revenue and clearly by profit. Even after generic entry, Lantus is among the top 10 at almost $8B sales.

So have we beaten diabetes in those years? No.

Being diagnosed with T1D is no longer a death sentence, but we are far from done. Despite having the best doctors, education and access to care, I struggled with control and eventually suffered from microvascular complications clearly driven by diabetes. Insulin, for me, was not enough and I am not alone. Diabetes is still the most common cause for blindness, kidney failure and amputations in the developed world, and increases the risk for heart attacks and stroke by about 4 times. It also leads to depression, cognitive dysfunction, impotence, dental disorders and various other issues. It truly attacks every cell in the body and accelerates the aging process.

What is happening in the innovative landscape, such as academia and small companies, is not reflective of the severity of the disease.

While we are seeing major influx of capital and talent into important areas such as cancer, immunology, and infectious disease, we are not seeing the same in diabetes. The average endocrinologist is above 60 years of age. Young scientists are not lining up to do research in diabetes, and funding into disease organizations for diabetes is going down as evidenced by JDRF research funding. In fact, 2015 revenues were down by $84M from 2008 and $26M from 2014 (http://thejdca.org/jdrf-financials/).

The for profit side is not much better. Venture capital is not going toward diabetes, and the new IPOs are not diabetes companies. An analysis done by BIO, showed that of all private financing only 5.7% went to metabolism, while 24.2% went to oncology. Only 5.3% of IPOs were in the metabolism field, while 22.8% were oncology related (https://www.bio.org/articles/emerging-therapeutic-company-investment-and-deal-trends). In the established company’s deal-making allocations, metabolism did even worse, with 3% of all licensing and M&A deals being in metabolism, while 26% went to oncology and 28% to infectious disease.

There are some great examples of success in our space where risk takers have made money and delivered new therapies and devices to market that have made a differences. We applaud investors in, for example, Dexcom (Don Lucas) and Animas (HLM management), companies that brought us continuous glucose monitoring and consumer-friendly insulin pumps.

Currently, we believe in the future for several companies, for example the ten finalists in the Lyfebulb Novo Nordisk Innovation 2016 Award competition including marketing veteran, Jeff Dachis’s OneDrop, John Sjolund’s Timesulin and newcomer (and winner) Brianna Wolin’s FidYourDitto. http://lyfebulb.com/lyfebulb-innovation-award-at-the-innovation-summit/. Recently, JDRF, announced the launch of their T1D Fund which will aim to invest donated funds into companies and their first bet was on BigFoot, a company run by former JDRF CEO, Jeffrey Brewer.  

What is also interesting when you reflect on the diabetes industry is the lack of smaller, public companies that are willing to place bets on emerging technologies and settle for revenues that are less than blockbuster quantities. There are less than 20 public diabetes companies in the US, with a majority being very large, and at least half of them in devices (http://investsnips.com/list-of-publicly-traded-medical-equipment-and-device-companies-focusing-on-diabetes/).

These kind of numbers do not generate new drugs/diagnostics/devices to help improve the quality of life for people with diabetes. The total number of people with diabetes is growing exponentially. There are 29 million diabetics in the US, 86 million with prediabetes, and a worldwide prevalence of over 400 million. The cost of diabetes in the US is approaching $300B, up from $245B in 2012 (http://www.diabetes.org/advocacy/news-events/cost-of-diabetes.html?gclid=CMPI_KCe4NECFQ6BswodnE4PlQ ). Interestingly, the cost is not driven by the drugs that treat diabetes (12% of total), but by the cost for complications and hospital care.

So what can we do about this relative lack of innovation and disinterest from the medical and investment communities about a disease that is taking lives, crippling people, and causing enormous damage to our economy? In my opinion there is a big need to change our attitude toward diabetes. Type 2 diabetes is not a lifestyle disease that can just be addressed with diet and exercise. Type 1 diabetes is not a disease that can merely be addressed with insulin and better glucose measuring methods. More insulin in type 1 causes more difficulties in regulating sugar and a greater likelihood of complications. Not addressing the underlying problems with type 2 diabetes will never solve the problem of why certain families have both obesity and type 2 diabetes in every generation.

I was wrong when I hid my type 1 diabetes for almost 20 years, and I was wrong when I tried to show that diabetes did not affect me.

Type 1 diabetes does affect the person and we must take it seriously. I know that organizations advocating for diabetes often try to portray success stories of people running fast, jumping high, climbing mountains, and winning trophies, but that is not the norm and those people would be winners with or without diabetes. Before I was diagnosed with diabetes I was the third best tennis player in my country and the top student in my school. I was a competitive person and diabetes did not change that, it actually drove me harder, but my body eventually told me to stop.

We must encourage financial institutions such as venture capitalists and banks to invest more money into companies doing innovative work in the field. We must encourage research in academia, and we must push the large companies that are doing well selling drugs that save our lives. Only with a newfound interest in the area will we see talent moving to diabetes, and only with the clear articulation of an unmet patient need will we see the overall landscape shifting towards addressing the opportunity. Investing in metabolic companies is a target for Lyfebulb and we hope many will join us. It will bring both health and wealth to our constituents.

Together we can beat diabetes.

 

Instagram Has Been A Lifesaver Since My T1D Diagnosis

I was 28 when I was diagnosed with Type 1 Diabetes. Like most people, I grew up not really understanding the difference. I thought there was one you got as a child, and one you got as an adult. There is no history of diabetes or autoimmune disease in my family, so honestly, I never really gave either much thought.

Then, I happened to have my yearly physical. Since everything else looked good, and I was always healthy, I lagged on getting my blood work completed. A couple of weeks later I got a really, really heavy period (sorry fellas) and went to urgent care. Long story short, they found multiple fibroid tumors (the largest was the size of a bocce ball) and told me to get that blood work taken care of right away. I got it done that day, which was when the rest of the whirlwind started.

Still thinking I was healthy with nothing to worry about, my husband and I left on a week long climbing/kayaking trip. A few days into the trip, I received a call that my fasting glucose was 300. They assured me it was probably a fluke but said that I needed to come in and have my a1c tested when I got home. During our trip I started to notice some other things- that my close had been fitting looser, and I was drinking a lot of water. We are really active so I thought maybe I just needed to adjust my calorie intake, and it was 4th of July weekend in Arizona so the water intake didn’t seem too odd. I should also mention that for probably 90% of this trip we were without cell coverage- something that still gives me the chills to look back on.

When I got home I had my a1c tested. By this point I had lost 25 pounds. Diabetes was still not even on my radar, in fact my team scheduled CT scans to get a closer look at the fibroids- suspecting cancer. Then my a1c came back at 12.3. I was misdiagnosed as Type 2 for about 6 hours (thankfully not by my doctor). My doctor knows how healthy and active I am, and she ordered a rush test for the antibodies that Friday afternoon. She told if my sugars didn’t go down I needed to go to the ER. That night I tested at 634 and to the ER we went.

I was in DKA, and dangerously close to a diabetic coma. I was immediately given insulin, and Monday was setup with my endocrinologist. A few days later the test confirmed Type 1.

The scariest part for me was how little the medical world seemed to understand about my condition.

When I was diagnosed I immediately researched the difference, and realized a lot of the information I was given in the ER only applied to type 2.

I was thankful that my general doctor knew as much as she did, but fast discovered that was not the norm. This diagnosis is scary enough, but it is worse to feel like you are not always in capable hands. As a newbie, I decided pretty much right away that I needed support of other people who actually knew what they were doing. Instagram and the community I have met through there have been such a life saver for me. I am thankful to have such a great endocrinologist, but there are some things you don’t understand unless you live with it everyday.

I owe so much to this community.

From the helpful tips to the endless support and words of encouragement, this community helps make this doable. It seems so much less daunting when you such an awesome support network. This July will be my first Diaversary, and I am so glad I decided to join this 24 hour support group we call Instagram. 🙂

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