Type 1 Diabetes for the Newly Diagnosed: What to Expect, What to Do, and How to Thrive
I am writing this post to explain why I felt so strongly to write my book, Type 1 Diabetes for the Newly Diagnosed, What to Expect, What to do, and How to Thrive.
According to CDC, the rate of incidence of T1D worldwide is increasing. Over the last 25 years, the incidence rate has increased by over 12%. In the United States alone, 1 in every 500 people has T1D and this number is only climbing. The reasons for this are believed to be from genetic factors, along with environmental stimuli such as the amount of nursing as a baby, the introduction and amount of milk, low levels of Vitamin D, and perhaps even the overly hygienic environment in which we live.
T1D (once known as juvenile diabetes or insulin-dependent diabetes) is a chronic autoimmune condition in which the body attacks the pancreas resulting in someone producing little to no insulin. Without insulin, someone will go into DKA [diabetic ketoacidosis - a painful and life-threatening complication], coma, then eventually death, if left untreated.
Despite active research, T1D has no cure. Treatment focuses on managing blood sugar levels with insulin, diet and lifestyle to prevent complications. Complications from unmanaged diabetes are often debilitating physically and emotionally for the person with the disease along with their loved ones who are left helplessly watching their T1D loved one deteriorate over time. Diabetes-related complications include depression, a severely reduced quality of life, kidney failure, heart disease, stroke, high blood pressure, nerve disease, amputations, and blindness.
We have come a long way in ways to prevent such dire complications. However, with the growing incidence of T1D and the cost barriers to necessary insulin and supplies, there needs to be not only much improved education, but better access to resources and healthcare. Especially in the beginning stages of a type 1 diagnosis.
An excerpt from Forbes Magazine (11.14.2018) is just one example of the hardships that come from a T1D diagnosis.
Kimberly Lavigne Martinez, 30: “I was diagnosed at 17 and lost Medicaid at 19, leaving me on my own and uninsured. I had to ration the little insulin I had left because I couldn’t afford it and went into DKA three times.
“Each episode cost me almost $100,000 and I still don’t have the means to pay it off. How on earth could anyone who can’t afford insurance afford to pay that?”
She later commented, “Why do we have to pay to stay alive? Isn't staying alive included in life, liberty, and the pursuit of happiness? None of us asked for this or did anything wrong that led to diabetes. No-one should ever have to choose between medical debt and dying. I’ve had to make that choice and still have nothing but neuropathy, gastroparesis, high blood pressure, retinopathy, and a panic disorder to show for it.”
I was diagnosed myself at the age of 4 years old (over 25 years ago), and learned the powerful impact of nutrition, exercise, education, and support. I keep my blood sugar in a healthy range (bewteen 5.4 - 5.9%) and have 2 healthy kids. I grew up with loving parents and had access to doctors, education, and the management necessary to keep me from developing other accompanying chronic comorbidities. I was lucky and my story is sadly more the exception rather than the rule. Seeing the devastation that comes from others who have less resources, I decided early on to dedicate my life to lessening the burden of diabetes.
Today, I work as a Registered Dietitian Nutritionist (RDN) and a Certified Diabetes Care & Education Specialist (CDCES). I work at Granger Medical in West Valley City, UT, and have my own online telehealth private practice where I consult people with T1D across the nation. At work, I see firsthand the effects of inadequate resources and education. People with diabetes for many years who never had the proper education come in with a list of chronic diseases.
Many of these patients never took the necessary care during the beginning days because they didn't have access to proper education and didn’t want to be burden to those around them. These patients selflessly neglected themselves in hopes of providing for their families. These patients are mothers who skipped their insulin to pay for their kids’ childcare and fathers who rationed their vials to pay for rent. After years of poor control, their diabetes has taken over and now completely controls their lives. They walk into the clinic, disabled, with missing toes and fingers, sometimes whole feet, on renal transplants or dialysis, after strokes and heart attacks, with piercing neuropathy, nauseating gastroparesis, and blind from progressive retinopathy.
These patients don’t have enough to pay for dinner, much less the necessary list of costly medications to treat their litany of debilitating diseases.
When they come to me in this state, I always wonder what would be their fate had they had better education and access from the start? The reason I wrote this book is to reduce this dreary fate. I hope for a future with better education from the start of a T1D diagnosis so a life of sorrow can be avoided. Having 25 years of diabetes under my belt, with 2 babies, and no signs of complications, I hope for a cure, but until then, my big dream is for everyone to live their own full lives, without limitations from their diabetes.
This book, Type 1 Diabetes for the Newly Diagnosed, is 180 pages long and its purpose is to be an educational resource that is easy to understand for all people with T1D, especially during the first days of an overwhelming diagnosis. From tracking blood sugar to counting carbs, to coping with the emotional tolls, this book is a tool to help someone live healthfully and fully with their T1D diagnosis.
Each chapter starts with a real story from real people who also have T1D. Many people diagnosed with a chronic disease such as T1D feel isolated, scared, and overwhelmed. During this time, people need to know their options for better management, know that the goal is never perfection, but progression and that he/she is never alone throughout their journey.
My purpose in writing this post is to help spread the word of this book. Doing so could serve as a lifeline for readers who either have T1D or have a loved one who is struggling with T1D.
If you have diabetes or know of someone with diabetes, I wrote this book for you. I hope you find that it is a not only a tool to improve your management, but also a resource for a life with better control and one without diabetes-related limitations.
Ariel Warren, RDN, CD, CDCES
UT-ADCES Chair-Elect Diabetes Care & Education Specialist Type 1 Diabetes for the Newly Diagnosed
As always, if you are struggling with your diabetes (newly diagnosed or long-time veteran). Perhaps you need pump adjustments, insight on how your nutrition is affecting your insulin sensitivity, you want to understand how to go about making your own insulin changes, you are suffering from poor absorption, or maybe you just what to work with a healthcare provider who understands diabetes on a personal level. Do not hesitate to write me an email or schedule with me for a consultation. I'm here to help and I love helping people with diabetes increase their control and quality of life.