Quality of My Life

By: Cassie Lynch

Today marks the ten year anniversary since having my entire colon removed, and the first step towards regaining control over my health.  I was diagnosed with ulcerative colitis at age 16 after many years of unexplained symptoms, pain, and feeling that no one doctor took my symptoms seriously.  Finally at age 16 I received an answer.  This started a new chapter of life: “what now- lets live with a chronic disease.”

I managed well for about 6 months after diagnosis with first level medications, but soon symptoms started to creep back: diarrhea, blood in stool, horrible bouts of pain, anemia, amongst other things no teenager wants to be dealing with.  That’s when I was introduced to corticosteroids, a trauma in itself.  While they can help manage the pain and symptoms- the side effects were terrible.  I was told to start them after my senior year high school photos as my face would “puff up like a chipmunk,” which it did.  It seemed from that point forward, all medications I tried led to some help with disease symptoms, but extreme side effects that seemed even more terrible to me.  Acne, chipmunk faced insomniac, who still had to run to the bathroom all the time did not scream you are managing your disease well, and your quality of life is better.  Quality of life was extremely poor and while my health was very poor, I was also extremely unhappy in how I was living my life.  Having to leave college, unable to go out with friends, living in pain, feeling ugly and unhappy was not how I planned life to feel at 18 years old.  I sound very negative, but that was the world I was living in.  It came to a point where medications were not even controlling my UC, and the idea of surgery was introduced to me.  While the thought of having my colon removed sounded like an alien operation, it was in fact life changing.  I am so grateful for my parents and how supportive they were during this time.  My parents were instrumental in getting me through these dark days, and have continued to support me since.  And luckily, with surgery life took a positive direction….

I was a candidate for J pouch surgery and a few days prior to my 19^th birthday, I had the first part of the surgery performed.  With ulcerative colitis, one option that patients with severe unremitting disease have is getting their colon removed.  By removing the colon, also known as the large intestine, the surgeon then fashions the small bowel in a reservoir to hold waste.  This allows for the continuation of “normal” bowel movements.  This surgery is usually done in 2 or 3 steps, and typically involves wearing a temporary ileostomy.  An ileostomy is when a piece of your small bowel is looped outside of the abdominal wall, and where you will wear a small plastic pouch attached to your abdominal wall to empty waste into.  While scary and with a lot of unknowns about the outcome of surgery- it was the best decision ever made in my life.  Thank you Dr. John Proccacino for changing, saving, and giving me back my life!

Since that surgery- I have been the healthiest and felt the best I have ever felt in my entire life.  In the past 10 years I have been able to go back to college, get my masters degree, have wonderful jobs, party and live like a 20 something year old with friends, and importantly found my path and passion in life.  My take away from my experience: you should never feel alone in what you are going through, and always search for help in improving the quality of your life.  I was someone who did not share what I was going through with anyone, and asked my parents to keep things quiet as well.  I was embarrassed of my disease and I was embarrassed of being different.  Now I understand the importance of connecting, and I hope no one goes through an experience like this alone.

My experiences drove me to get my masters in mental health counseling, as I feel strongly that mental health is greatly affected by having a chronic disease.  Since then, I have worked with the Crohn’s  & Colitis Foundation at their national headquarters, helping patients understand their disease and connecting them with local resources.  I now am working with Lyfebulb as I feel strongly aligned with our mission to help connect, inspire and impact those affected by chronic disease and really importantly- work to help improve quality of life.

Quality of life is lost for so many with chronic disease.  Different diseases affect many different aspects of ones life, but there is common ground for us to all connect upon.  I hope as I move forward with our work at Lyfebulb, I can learn more about what others are going through with Type 1 Diabetes, with different cancers, with MS, etc., and from there come together with ideas and solutions to help improve quality of life for patients.  We need cures, and these will happen in the long term, I am sure of it.  To help now- we must work to improve quality of life.

This day and this week I will celebrate my 10 year post surgery anniversary and my 29^th birthday.  I am so grateful for every wonderful day, and even for the experience of having ulcerative colitis.  It taught me to appreciate life at a much younger age, to really love those around me, and to live happily.

Cheers to an improved quality of life!

In honor of my friend, Denise Higgins: “Being cured by a pancreas transplant isn’t as simple as one would think”

By: Dr. Karin Hehenberger

In January of 2009, I was diagnosed with end stage kidney failure, after almost exactly 20 years with type 1 diabetes.  I was told that I needed a transplant and that if I went forward with the kidney transplant, provided I had a donor, I could also be placed on the list for a pancreas that potentially could cure my diabetes.

All this happened very fast and I was scared and quite ignorant about the process. Although I had studied medicine and worked in the life sciences industry my entire career, I was not familiar with the surgery and the medicines that I would need to be on for the rest of my life.  I did what most people would have done, spoke to my family, searched the internet, and reached out to thought leaders across the world for answers to my many questions.  Since I was in the unique position of working in the industry, and having a medical background, I had access to scientists and doctors all over the world, and I have always been a highly investigative person with a scientific mind, so my search was thorough and highly efficient.

What I had never done in the past was to speak to people who had been through the same experience. When I was diagnosed with diabetes in the summer of 1989, I did not speak to anyone who was diagnosed with the disease, but actually kept the information to myself, and asked my parents and sisters to do the same.  This time, I knew better, and actually asked my surgeons for names of people who had been through a double transplant – of which there were not that many!

Although there are about 17,000 kidney transplants done each year in the US, there are only about 100 pancreas transplants done, so finding a person with type 1 diabetes, who had had a kidney followed by a pancreas, and would be willing to talk to me about the procedures is not easy. I was fortunate enough to be introduced to two fantastic women, Tracy S. and Denise Higgins. Tracy lives in Connecticut, and was instrumental in getting me prepared for the kidney transplant, and guiding me through the issues following it. She helped me with what kinds of foods that my stomach could handle, and how to address multiple side effects that were rampant initially. Tracy remains a friend, and I hope we will see posts from her on this website soon!

Denise and I met several times over the nine months between the kidney procedure and the pancreas. She and I enjoyed lunches together and I was envious of her not needing to inject insulin.  She already had her pancreas, and was now living a life free of worries and I admired her.  She no longer had to worry about hypos at night, destruction to the eyes, and destruction of the new kidney.  I also admired Denise in her professionalism, since she was working in the financial industry and had made quite the name for herself. She was brilliant and kind – an unusual combination on Wall Street, and she was also so well put together, and exuded style and beauty on the outside and from the inside.

I will never forget the feeling of being insulin-free again.  January 2, 2010 was the day I received my new pancreas, and from then I have not needed exogenous insulin.  When I returned to work, two months later, I invited Denise to lunch, and we both enjoyed a delicious meal, without thinking about carb-counting or timing our insulin doses to the food service.  Over the years to come, we would meet over lunch and we shared experiences and when she asked me to refer a kidney doctor to her, I gladly introduced her to my doctor – David Cohen at Columbia Presbyterian.

In July of 2012, I turned 40 years old, and my two younger sisters decided to give me a big birthday party at a restaurant in NYC. They invited friends from all over the world to come and celebrate, and we had a fabulous evening of dancing, eating, drinking and talking. The theme was ABBA and the 70’s, since all young Swedish girls who grew up in the 70s and 80s had pretended to be either Anni-frid or Agneta , and knew all the songs by heart! Dancing Queen, Waterloo, Money Money Money… Of course, my friend Denise was invited and she showed up. That was the kind of person she was. Extremely reliable and loyal and with a kindness that was apparent to anyone who met her. Several of my friends told me how much they liked her, and Denise seemed to have a great time as well that evening.

In January of 2014, I started my company, Lyfebulb, to help people with chronic disease improve their quality of life. I reached out to Denise, since she was a natural to get involved, and I was eager to finally be working with her.  When I called her, I immediately knew something was wrong.  Her voice was weak and her tone down.  She was sick and in the hospital.  She had an infection she said.  I continued to reach out to her, but was not allowed to visit since I am on the same drugs that she was – i.e. immunosuppressive medications that allowed our transplants to be functioning well in our bodies.

This is the reality, it sounds fantastic to replace organs that do not work any longer with donated ones.    In her case she got a kidney from her sister, and I got mine from my father, and we both received pancreas’ from deceased donors; but to allow for these organs to not be rejected, we need to be on drugs for the rest of our lives that suppress the immune system.  There are natural consequences with these medications, including increased risk of infection/being less effective in fighting infections, and being more likely to develop certain kinds of cancers.

I had experienced the latter already through a mentor and good friend of mine who happened to be the former Chairman of JDRF – Jim Tyree.  Jim had suffered from T1D for many years, but still managed to become one of the most powerful men in Chicago.  He went through kidney and pancreas transplants but then developed cancer and passed away despite fighting until the very end.  I have myself experienced the consequences of the immunosuppressants already, despite only being on them for a total of six years.  Last year I contracted Salmonella typhii, while vacationing in the Dominican Republic, and ended up in the ICU due to sepsis.  I needed IV antibiotics for six weeks and it ruined much of 2014 for me, due to long term consequences such as clostridium difficile and weight loss making me tired and weak for a long period.

My friend Denise never got rid of her infection completely.  She fought for 14 months against the nasty bugs that caused her pneumonia, and despite the best medical care and consults from all over the world, she passed away May 15, 2015. I will not give up on my journey to help people living with chronic disease and improve their quality of life.  I have a special passion to improve the outcomes for people with type 1 diabetes and successfully eliminate this terrible disease.  Getting a pancreas transplant is only a bridge to a cure.  It is not a real cure.  Together we must identify solutions to provide everyone with a defective pancreas insulin-producing cells that can be implanted without the need for toxic immunosuppressive drugs.  This will not happen overnight, and it will not happen without team work across borders and disciplines.  When the United States decided to get to the moon, they worked on a plan until they solved the problem.  When they decided to create the first nuclear bomb, they reached an answer.  We need to address curing diabetes in a similar fashion.  There are no alternatives to success.  No pride, no territorial behavior, but relentless focus and clear leadership is required to win this battle.

Denise will forever motivate me to work harder and be a better person.  I will never forget her, and I will not give up until we have solved the riddle that is type 1 diabetes.

Karin

My Continuous Glucose Monitor

By: Robin Smith

What is the Continuous Glucose Monitor? Initially, I was pretty skeptical.

I like my freedom.  I’ve never been big on commitments.  I already had an insulin pump attached to me 24/7.  Why constrain my life with yet another medical device?

But I couldn’t stop thinking about it. Continuous glucose monitoring… It sounded so informative, so useful.

At the time, I wastesting my blood sugar over ten times a day, and once or twice during the night. But I still felt that there were large gaps in the data. I finally had to admit: This new device was kind of intriguing. So…

I did some research. I learned that the Continuous Glucose Monitor (CGM) system has several different components, including the sensor, the transmitter, and the insulin pump. The sensor has a cannula (a small tube, about one centimeter long) that gets inserted into the skin. The sensor is the part that is continuously reading glucose levels. The transmitter gets attached to the sensor. It’s the size of a soda bottle cap, just a little wider and flatter. The transmitter is the part that sends a new glucose reading to the insulin pump every few minutes. The pump then displays these continuous readings.

I decided to give it a trial run. Logistically, it took some time to adjust. And I had to learn the systems. But within a few months, I was sold!

The CGM allows me to keep better control of my diabetes. It’s constantly updating my most recent glucose reading. It shows when my blood sugar is going up or down too fast. It alerts me if it’s out of range. It displays graphs of my glucose levels over time.

And despite my initial reservations, it actually gives me more freedom than I’ve ever had!Here are some highlights of my life with the CGM:

I know when to eat.  Insulin can take anywhere from 10 to 60 minutes to start affecting my blood sugar. The CGM helps me get the timing right. By watching the graph closely, I can ensure that the food and insulin are working at the same time to balance each other out. My post-meal glucose levels are so much more stable now!

I can see where my blood sugar’s been.  The CGM graphs are dreamy! As a person with type 1 diabetes, I highly value thiskind of real-time information. The 3-hour graph shows the immediate effects of food, activities, insulin, etc.. The 6-hour and 12-hour graphs keep me in tune with how my day has been so far, and help to predict what my glucose levels will do in the next few hours. The 24-hour graph is great for reviewing a full day/night cycle and adjusting pump settings accordingly.

I have more information and can adjust settings with better precision.  TheCGM 24-hour graph helps me identify glucose patterns and make adjustments to help stay in better control. For example, while reviewing this graph one morning, I noticed my blood sugar had started dropping while I had been asleep. Over the next few days, I saw this happen again around the same time. Once I was sure this was not due to a lingering bolus, I felt confident changing my basal rate. Pretty soon, the graphs showed smooth sailing through the night!

I don’t overdose a low blood sugar.  If I ever begin to notice a rapid drop in my 3-hour graph, I’m ready for it. I monitor carefully and listen for the “low” alarm. When treating a low, I’ve discovered that a little sugar goes a long way.I test my blood, take two glucose tablets, and allow my glucose to stabilize slowly. Inmy pre-CGM days, I always aimed to get my blood sugar back up really quick, and had a tendency to overdose.My blood sugar would often shoot up too high, and would result in a roller coaster of spikes and drops. With my CGM, I can keep my glucose levels more stable by treating lows more gently.

The CGM is relatively discreet…Most of the time, the sensor and pump aren’t noticeable. They tend to be concealed under my clothes. But I’m honestly such a fan of the CGM, that it doesn’t bother me when people do notice. “No, it isn’t a pager,” I smile when people ask. And I’m eager to explain: “It’s actually a medical device. For diabetes.” I enjoy these opportunities to talk about all the ways the CGM has improved my life!

Please share! I’m so curious to hear other peoples’ experiences with continuous glucose monitoring systems! Do you use a CGM? What kind? What are some highlights of your life with the CGM? Are you considering a CGM? What would you like to learn about it?

Please write a comment below!

For more information about my CGM, check the Medtronic website: http://www.medtronicdiabetes.com/treatment-and-products/continuous-glucose-monitoring

A New Journey

By: Jessie Kaden

On the outside I seem like any normal eighteen year old, going to college and fulfilling my dream of living in New York City, but on the inside it’s a completely different story.  Ever since I was born, I had a variety of minor health problems, like asthma and allergies, which I quickly became used to.  Hospital visits, going to the doctor and getting weekly shots became normal for me and I learned to appreciate my health at an extremely young age.  In hindsight, it was preparing me for the big changes that would happen in my life.

On a family vacation to Philadelphia when I was ten, I became extremely sick with stomach pains – something I had never had problems with before.  At the time I attributed the pain to something I ate or overtiredness from the trip.  I expected it to pass, except it never did.  New symptoms started to arise such as fatigue, severe weight loss and joint issues.  It felt like my body was falling apart.  My doctors didn’t believe my symptoms were anything of concern and thought I was exaggerating my pain.  Their lack of support or help left my family and me feeling hopeless and lost.  I was living two different lives, one at home and one at school where I was trying to make it through the day and hide my pain.  As time went on and my daily pain became worse, I realized that this problem might be permanent and felt like I would never find an answer.  For three years I struggled with dealing with the worsening pain and having my doctors minimize my situation, until I ended up in the emergency room on my thirteenth birthday.  I could barely breathe or walk without sharp abdominal pains hitting me.  At the hospital, they did numerous tests and asked a bunch of questions, but I left with no answers.  When I came home from the hospital later that day my family tried to salvage what was left of my birthday, but I could barely see the flames of the candles through my tears.

A few weeks later I had my first colonoscopy and finally received an answer that I had been waiting three years for.  I woke up from the colonoscopy groggy; I couldn’t keep my eyes open, but I could hear in the distance my parents talking to the doctor.  They were throwing around names of medications and it was then when I knew.  On September 21^st 2009 I was diagnosed with Crohn’s Disease, a chronic disease which affects the digestive system, also known as Inflammatory Bowel Disease.

Everyone who has Crohn’s, or Ulcerative Colitis, two forms of Inflammatory Bowel Disease, has different symptoms and areas where the disease is active, which makes it harder to manage and find the right medications.  Along with the disease there are many systemic issues that you can have.  Symptoms I had include anemia, abdominal pain, osteopenia, psoriasis, eczema, arthritis, gluten intolerance, weakened immune system, and the most painful of all, kidney stones.  It’s a chronic disease, so there is no cure.  At thirteen it was so hard for me to wrap my head around the diagnosis and the fact that it would be with me for the rest of my life.

Now a few years down the line at eighteen years old, I feel so different than that thirteen year old first getting a diagnosis.  From the point of diagnosis, I began a new journey, one that I’ve been on for the past six years.  It has been a journey of adapting and accepting a new lifestyle and a new outlook on life.  There have definitely been highs and lows that have come with this journey, but the lows only make me stronger.  The life lessons, the opportunities, and the people I’ve met because of this disease are invaluable and make all the pain worth it.  I now attend my dream school, Macaulay Honors College at Hunter College, in my dream city, New York City, despite the illness I struggle with.  While Crohn’s can be an obstacle, I’ve never let it take away from who I am and where I am headed.

Book Review: Ten Things You Need To Know About Living with Diabetes

By: Robin Smith

Thanks to Dr. Karin Hehenberger for this new book! Here are some things I like about this read:

It’s informative.  Even with more than twenty-five years of living with type 1 diabetes, I learned some great new stuff here! My liver, I discovered, helps keep my glucose levels from going too low. And hypoglycemia can occur if the liver is too busy metabolizing alcohol. I also learned more about ketoacidosis, type 2 diabetes, and how exercise increases the uptake of glucose into my cells. I even took the opportunity to test my husband’s fasting blood sugar, which I was relieved to find was well below the type 2 diabetes mark!

The formatting is clear and easy to read.  This book is a good length. It’s educational and easy to read without being too long. Each chapter is designed with a heading, body, and summary. As I read through the book, I found that this made the information more accessible. I could flip back and forth between sections, relocating and rereading various ideas. Having read the detailed information in the body of each chapter, I appreciated reading the key points reiterated as bullet points.

It’s frank and honest.  Dr. Hehenberger shares many of her own experiences with diabetes in a candid and upbeat manner. I felt a sense of solidarity, reading about many of her personal struggles. I’ve spent a good part of my life trying to ignore the fact that diabetes complications are a leading cause of death. I’ve always done my best to hold this information at an arm’s length, and simply try to maintain careful control of my health. It was reassuring to read Dr. Hehenberger’s assertion that by managing diabetes with “medicines, diet, and exercise, you can live a long, healthy, and enjoyable life.”

It’s reflective.  I appreciated hearing how Dr. Hehenberger grew and learned from her challenges. In one story, she describes how she felt the need to keep her health condition a secret. I identify with her reservations, since bringing it up with new friends and acquaintances can feel awkward. But I’ve actually made a point to be forthright about having diabetes. And I’ve found that demystifying and normalizing my daily healthcare helps other people feel more comfortable around me. I’ve even given spontaneous lessons to everyone from relatives to folks I’ve sat next to in a bar. So it was gratifying to read Dr. Hehenberger’s discovery that, “a relationship can grow into something better and more fulfilling through honesty.”

It’s written for you.  This book is not just for doctors, or newly diagnosed patients, or even those of us who’ve had diabetes for decades. It explores ten areas of interest for anyone affected by the disease. It covers a range of issues and concerns, from advocating for yourself at a restaurant to building a medical support network. It’s written to be easy to pick up, simple to comprehend, and convenient to utilize. This book is exactly what it claims to be: ten things that will help you understand what it means to live with diabetes.

Prepared for Anything, Diabetes Style!

By: Robin Smith

Finding the Balance

This was my chance to see a glacier, a real glacier– in all its frozen, spectacular, immensity. It was a few hours away, by boat.

But suddenly, my insulin pump blared the ‘no delivery’ alarm. I had a moment of panic. “Nooo!” I moaned. “Should I turn back?”

For people with type 1 diabetes like myself, going without insulin is a physically challenging experience. I knew that putting my health first was the proper thing to do.

But… what about the glacier?

Over the years, I’ve developed a game-plan for moments like this. I try to plan ahead as much as possible. I bring basic medical supplies, backup items, and backup strategies whenever I leave home. In a medical emergency, I do my best to stay calm and think resourcefully.

Basics

I’m pretty good about bringing my insulin pump, glucose meter, strips, and lancets wherever I go. These are the everyday basics.

For a swimming-type-of-adventure, the basics are even more basic: three test strips, one lancet, the glucose meter, and some cash. I stuff these all into a water-proof purse. I test my blood sugar and take an extra bolus. Then I leave my pump and everything else in a safe place, and I’m ready to go!

Backup Items

For low blood sugar, I like to keep glucose tablets, a rice crispy treat, and some one-dollar bills on hand. The money is reserved for vending machine juice, in case I run out of glucose tablets and snacks.

Digging through my purse, I also have…

• a safety pin, in case I run out of lancets.
• an empty insulin cartridge, in case I need a refill.
• a syringe, in case my pump malfunctions.
• an infusion set, in case the one I have rips out.
• a bottle of test strips, in case my regular supply runs out.
• a battery, in case my pump battery dies.
• waterproof Band-Aids, in case my sensor or infusion site need reinforcements.

Backup Strategies

My backup items are almost always enough to keep everything running smoothly. But for times when something unexpected comes up, I always have my backup strategies:

Stay Calm

This came from a truly challenging family backpacking trip: After hiking for two days into the mountains, it started pouring rain. We set up our tents, swatted mosquitos, and tried to find things to laugh about. But in the morning, we discovered my glucose meter had been ruined.

“Should we turn back?” We looked at each other in dismay. But living without blood tests for a few days wouldn’t kill me. Se we kept going.

Despite everything, I was able to control my glucose levels reasonably well. I took breaks throughout the trip to close my eyes, breathe deeply, and consider, “What is my blood sugar doing right now?”

Be Resourceful

Forty minutes from home, I was on a train to a friend’s birthday party. ‘No delivery’ flashed on my pump, and I realized I was out of insulin.

“Damn! Should I turn back?” I wondered.

I looked down at the empty cartridge, and noticed that the tubing was still full of insulin. And then I got an idea. I sorted through my backup supplies, and pulled out the syringe. Disconnecting the pump from my body, I injected the empty syringe into the tubing and filled it with insulin. I managed to stay in control by testing my blood sugar and taking shots from that syringe throughout the evening.

Being Prepared

Getting to experience a real glacier, up close and personal, was perfectly exhilarating. I honestly don’t remember a minute of the recovery process.

Being prepared is a complicated process for people with type 1 diabetes. And sometimes, I do have to put my health first and cancel my plans.

But most of the time, I’m well prepared for what life and diabetes throw at me!

Autism Awareness Month

Autism Awareness Month

By: Brittany Brothers, RN

Ready or not, the month of April has arrived! Taxes, showers and fools in abundance, this month does not exactly have the best reputation. No need to worry though, despite it’s potentially troubling aspects, the month of April also has some pretty incredible positives. Flowers begin to bloom, the weather gets warmer, new beginnings flourish, and last –but certainly not least — the month of April is Autism Awareness Month! Autism Awareness may not be the first association most people make with this happening fourth-month of the year, but for me it marks an opportunity to shed light on a cause that is particularly near and dear to my heart.

I have personally had an awareness of autism for as far back as my memory takes me. My father, a Ph.D.-level Board Certified Behavior Analyst specializing in autism treatment and research, is the Executive Director of Somerset Hills Learning Institute, a school for children with autism and my mother is the school’s nurse. Having the privilege of being frequently involved with the Institute led me to develop a deep understanding of the tremendous effect autism has on the lives of those diagnosed and their loved ones. Over the years I have witnessed the beautiful blessings these children bring to the world around them. I have seen the often-agonizing difficulties that accompany the diagnosis — including but nowhere near limited to medical, financial and behavioral challenges and I have observed incredible transformations made possible with a tirelessly dedicated team of people (teachers, family, medical personnel to name a few) operating from the science of applied behavior analysis in an individualized, research-based approach.

For those unfamiliar with what it means to be a person with autism spectrum disorder, the DSM-V defines autism by way of a spectrum involving a range of developmental deficits across cognitive, social, emotional, and communicative domains, as well as abnormal behavioral patterns such as hypo/hyper reactivity to stimuli, atypical repetitive movements, sounds or rituals. Although each person with autism displays skill deficits across this range of diagnostic criteria, each has their own unique presentation of symptoms (Autism Speaks Inc, 2015). “For example, although communication skills are not as they should be, one child may display no speaking skills while another can speak — and even hold conversations — but with a limited range of topics or limited range of intonation. Similarly, we see peaks and valleys across cognitive skills. One child may be able to read at three but demonstrate no comprehension while another may be able to comprehend sophisticated material, in spite of being only 3 years old. And then, of course, there may be another 3-year old not yet reading.” (K. Brothers, personal communication, March 20, 2015).

Despite the extensive amount of science and research that has improved treatment over the last half-century, this is only one piece of the puzzle pertaining to this ever-more-so prevalent diagnosis. An alarming, increasing trend in prevalence rates has been revealed through recent studies. We now know that the rate of 1 in 5,000 children diagnosed with autism in the US in 1975 (Seneff, 2014), has risen to 1 in 68 in 2010 (CDC, 2015). Even more frightening is the prospect of this continuing to be a perpetually-rising rate into the future. Although many studies have demonstrated correlations between the increase in autism and factors such as parental age, heightened awareness, environmental factors, and genetics, much remains a mystery when it comes to understanding an exact cause or how to prevent it.

More recent studies point to environmental factors as a larger part of the equation than initially suspected. Stephanie Seneff (2014), Senior Research Scientist at MIT Computer Science and Artificial Intelligence Laboratory, brought to light the (quite literally) gut-wrenching correlation between the toxic effects of glyphosate toxicity and known biomarkers of autism. Also included in her disturbing findings was a bio-chemical explanation of the toxic effects of specific elements that are used in production of most food products found in the typical American household. Glyphosate is the herbicide found in roundup, the most commonly used herbicide in the world. Seneff (2014), elaborates on the strong correlation between the rise in glyphosate use in the US and the rise in autism from the early nineties to today. She goes on to describe in detail how glyphosate ingestion leads to sulfate synthesis disruption, chelation of necessary minerals, and promotion of aluminum absorption. She also identifies biomarkers for autism including disrupted gut bacteria, low serum sulfate and certain mineral deficiencies as well as evidence correlating toxic exposure to aluminum and various neurological diseases. She states that evidence-based research suggests a strong link between GMOs and gastrointestinal disorders and talks about the known link between neurological disorders and GI disorders.

This startling information in combination with the already widespread hype regarding the link in a number of diseases (not only autism) to alterations and certain chemicals used in the production of common American products, was enough for me to immediately consider purchasing some overalls and exploring my options for farming food for myself and loved ones. My next thought was how truly irrational as 1) I am a New York City resident (enough said); and 2) I’m not sure how I feel about the overalls trend (no offense if you are a fan).

Okay but seriously, the reality of the situation is that despite any of the above correlations and research, there are still so many uncertainties when it comes to the cause and prevention of autism. It does appear, however, that the autism community is closer than ever to finding answers so desperately needed relating to these issues and this is excellent news to say the least!

There is an incredible amount of hope from spreading awareness as well as impeccable strength within this community of people bound together by devotion to the common goal of improving the lives of those affected by autism through science. Research has already given us a sophisticated level of understanding how to help. Science will continue to empower us with a foundation from which to work to prevent this debilitating disorder and to propel us forward into new treatment discoveries. My excitement for Autism Awareness Month only intensifies as I imagine the possibilities associated with increased awareness about this very special cause.

References:

DSM-5 Diagnostic Criteria. (2015). Retrieved from  https://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria

Data and Statistics. (2015). Retrieved from    http://www.cdc.gov/ncbddd/autism/data.htmlStephanie Seneff. (2014). Autism Explained: Synergistic Poisoning from Aluminum and Glyphosate [PowerPoint slides]. Retrieved from http://people.csail.mit.edu/seneff/glyphosate/Seneff_AutismOne_2014.pdf.

Seneff, S. (2014). Autism Explained: Synergistic Poisoning from Aluminum and Glyphosate

[Video file]. Retrieved from YouTube website https://www.youtube.com/watch?v=a52vAx9HaCI

Thanks, Diabetes!

By: Robin Smith

An Optimist’s Outlook

Okay, I’ll be honest: Living with diabetes is not an easy ride. Even beyond physical limitations and constant medical adjustments, it’s tough. I could probably fill a page with complaints about the associated frustrations, blood tests, fatigue, etc. But that being said, diabetes has helped me out a lot too. In reviewing the last thirty years, I’m actually grateful for the positive impact it’s had on my life. I appreciate that it has given me more opportunities for emotional resilience, physical strength, and overall health.

So I’d just like to say, “Thanks, diabetes!”

How Diabetes Guides My Self-Confidence and Endurance

When I was a kid, my friends seemed awe struck whenever I did a blood test.  “Look, she’s doing it!” “Cool.” “Can I see?” “Wow, you’re brave.” “Does it hurt?” Pricking my own finger without flinching won me admiration and respect from my peers. I knew they were impressed, and it boosted my self-esteem.

“I’m a tough kid,” I thought. “Blood tests don’t scare me!”

I remember being in a doctor’s office when I was nine. A nurse approached me hesitantly, holding a syringe between her fingers.  I could see her anticipating that I might start screaming and bolt for the door. “I have diabetes,” I told her, calmly. “I give myself shots all the time.” I recognized with self-satisfaction that other children were rarely as collected as I was in these situations. I tingled with pride, and the nurse breathed a sigh of relief.

As I got older, having diabetes helped me recognize more of my own capabilities. Managing glucose levels during my high school years was extremely challenging.  But despite frequent confusion and dizziness, I was determined to do my best. And even though it was a daily struggle to control my blood sugar, I still did reasonably well.  I felt that my good grades indicated my success on a deeper level than just academic comprehension. They demonstrated that I had succeeded in meeting the demands of both diabetes in addition to the challenging coursework.

As a young adult, my glucose levels were constantly spiking. It was a roller coaster. I remember many times when I would simply cancel plans, cry, and take a nap. At one point though, I realized that I needed to develop strategies to keep going.

Walking into a high-stakes job interview and panel presentation, I discovered that my blood sugar was over 400. I felt drained, fatigued, and depleted. But I knew that cancelling was not an option. So I took some deep breaths, wiped my face, and walked in.

When I was later offered the job, at a significantly higher salary than my previous position, I was elated. That experience has become a reference point for me. It helped me recognize my own ability to persevere. I’ve learned to remind myself, “I’m a strong, diabetes-tested individual. I can do this!”

How Diabetes Inspires My Fitness Routines

Around New Year’s resolution time each winter, I notice an influx of new faces at the gym. While we all strive to stay committed to our fitness goals, I personally get an added incentive in keeping active throughout the year. Thanks to diabetes.

I’ve noticed that most gym-goers tend to have long-term goals: building muscle, gaining flexibility, losing weight, etc. But they rarely see results fast enough to stay motivated, beyond January. Three days a week of weight lifting, stretching, or cardio activities for an entire month, with no visible results? I probably wouldn’t stick around either!

But lucky for me, diabetes demonstrates more immediate results. And this makes it easier to stay on track. Twenty minutes of cardio exercise is generally enough to see an effect in my blood sugar. And with a consistent weekly fitness routine, my glucose patterns become more predictable.

In my college years, I was delighted to find that by jumping on the treadmill before lunch, I was able to maintain closer control throughout my afternoon classes. My friends gave up trying to invite me to brunch on weekends, because they knew it conflicted with my fitness routine. I remember a lady that worked at the gym remarking, “You are religious about your workouts!”

“Well, yeah.” I could have told her. “I’ve got diabetes to motivate me.”

This dedication to staying active has been reflected in both my diabetes management and my health in general.

How Diabetes Supports My General Health

Diabetes forces me to maintain a healthy lifestyle. I’m certainly not always in the mood to slow down, plan ahead, and behave responsibly. I just know that diabetes won’t take a back seat if I stop taking care of myself.

So I’ve grown accustomed to monitoring glucose levels, eating well, taking desserts/alcohol in moderation, and exercising regularly. Without diabetes, I probably wouldn’t be so careful. And I remind myself that the way I stay healthy would be great for everybody.  It’s just that not everybody has diabetes to remind them to do it. But I do!

Every day, diabetes prompts me to pay attention to my body and respect my physical needs. I try to take it easy when I’m sick, eat meals on time, stay active, and sleep well. Because I know how badly stress affects my blood sugar, I’ve also developed strategies to minimize anxiety and tension.  In general, I believe that I’m a lot healthier because of diabetes.

Conclusion

Diabetes has guided me to being a stronger and more resilient person in many ways. The challenges that it’s put me through have helped me learn more about myself and have pushed me to overcome boundaries. These experiences have made me more self-confident and self-assured. Diabetes continuously renews my dedication to staying active and sticking to my fitness routines. It reminds me to eat well and maintain a healthy lifestyle. Through living with diabetes, I’ve learned to respect my physical limitations and to celebrate my accomplishments.

Thanks, diabetes!

Solider(s)

By: Anna Hehenberger

“When our troops serve, their families are serving, too.”  This slogan is used in advertisements in support of the US military, and on the website of the White House.  (See http://www.whitehouse.gov/joiningforces.)  I’m sure that this sentence rings very true for soldiers and their families who live in uncertainty every day and have to show a form of bravery that normal citizens certainly cannot understand.  It is, however, also quite fitting to those suffering from various debilitating diseases and those around them who love them.

When I was five on an unusually warm and sunny day in Sweden, I was pulling on my mother’s skirt, urging her to get off the phone to give me money for an ice cream.  When she did not comply, I quickly understood that something was wrong and that she was in no mood to hear me whining about wanting a treat.  It was the call that changed our family forever; my oldest sister had been diagnosed with type 1 diabetes.

In the beginning I did not understand what that meant.  I knew my sister was sick and wouldn’t get better, I knew my mother cried about it a lot, and we no longer drank regular soda.  We are not a religious family, but I began praying at night that my sister would get better or that I could also get diabetes if that meant that she would no longer suffer from it.  God neither gave me diabetes, nor did he/she heal my sister.  I since refuse to go to church, as I became disillusioned at an early age.

As with any chronic illness, diabetes never goes away and it’s complications can devastate the body, and as it does the person who suffers from it’s family and friends do as well.  The difference I suppose is that one does not “enlist” in diabetes as one does in the army.  A person with diabetes is not fighting for democracy or against terror, and is not given badges of honor if they survive or win.  A person with diabetes is fighting against her own body as it ceases to function the way it should, and in some cases breaks down.

Unfortunately for my sister, she suffered from a variety of complications due to diabetes at a fairly young age.  She required laser treatment on her eyes as they began to bleed internally.  She went into kidney failure in her thirties, but thankfully was given the gift of life (for a second time) by our father when he donated one if his kidneys to her.  Finally, my sister was given a new pancreas by a deceased donor as her blood sugar became so uncontrollable that it was determined that she qualified for this rather rare surgery.  Now my sister is on a regimen of medicines that prevent her two foreign organs from being rejected by her body.  She does, however, no longer require insulin shots every day to control her blood sugar.  These medications have their own complications, however, making her unusually susceptible to infection and at a higher risk for cancer.

Regardless, she has soldiered on, and so have we, the people who love her.  We have all been affected by my sister’s illness, have grown stronger and closer because of it, but have at times been heartbroken and disillusioned.  My sister has now founded her own company, which seeks to create a community that connects people with chronic disease, inspire them to change their behavior and to ultimately impact their lives.

Lyfebulb will have the power to change the lives of those who suffer from chronic illness, as well as those who love them.  I am proud and excited to be a part of this next chapter in my sister’s journey as she uses her past experience both personally and professionally to make an impact in the world of chronic illness.

An Inspiring Journey

By: Nick Gogel

It was the August before I started kindergarten when my life would change forever.  I was four years old and my mom took me to 7-11 for my favorite treat, a Slurpee, before leaving me at my grandparents so she could go to work.  She says as soon as I finished the sugary drink I started hysterically crying saying I didn’t want her to leave, which was completely out of character for me.  She knew something was wrong and the next morning we went to the doctor who diagnosed me with type 1 diabetes.

The next obstacle I remember was the first “shot!” The only other time I had an injection was for a vaccine, which was the most painful thing I had ever experienced.  So when the nurse came in with a needle, I left crying scared.  Thank God my mom was able to calm me down and the nurse was so good I didn’t even feel the needle.  First Diabetic Shot = Success.

And in all honestly, those were the only two “bad” childhood diabetic memories I have.  I was incredibly fortunate to have a loving mother who figured how to raise me with this disease, but never make me feel different or like I even had a disease.

I am the oldest of four kids in a single mom family, so rather than having me eat differently than my brothers and sisters, we all changed to skim milk, diet coke, and had our 10, 2, and 8 o’clock snacks.  When it was a classmate’s birthday in school, my mom and teacher would make sure the parent sending in treats would make me a cupcake for me with no icing.  Halloween we would pass out toys rather than candy so I had the cool house.  I really never felt like I was different than any of my classmates because we found a way to make it so I never had to be excluded from anything.

Despite being diabetic, I couldn’t have asked for a better childhood.  My summers were spent down the Jersey shore with my friends and family and the year was filled with playing sports, parties, and keeping on the honor roll.  I earned an academic scholarship and played college basketball, while graduating Cum Laude.  Currently I live in Manhattan, am a working model with Ford, and manage the Internet Marketing for Elegant Bridal Productions.

As cliché as it sounds the moral of my story is that diabetes does not have to stop you from doing anything.  It just makes you pay a little more attention to what you are eating and drinking, but that’s not necessarily a bad thing anyway