There is a Change a Coming, Coming Down the Track…
Type 1 diabetes is no longer thought of as just juvenile onset, or young, small, slender children. We know type 1 diabetes to be an autoimmune disease that strikes at any age, with sometimes an insidious onset that steals, kills, and destroys families. A United Kingdom study states that 42% of their registry patients were 31-60 years of age with a new type 1 diabetes diagnosis. Today in the United States, one-third of our population is overweight and another one-third obese. Do not be deceived; critical thinking skills and assessment tools are needed to identify this high risk group that requires insulin daily to live.
Change is Now
On November 13, 2018, in the Harrisburg Capitol, a group of passionate advocates are working diligently to change what currently is considered a delayed diagnosis of type 1 diabetes. A team has been formed including Tamara Oser, MD, Associate Professor, Department of Family and Community Medicine, and Residency Research Director of the Family and Community Medicine Residency Program at the Penn State College of Medicine. Dr. Oser has already begun work to create a study to assess current physician and provider knowledge of the signs and symptoms of diabetes, and a subsequent collaborative action plan for first responders to implement so that this life-threatening diagnosis never escapes a provider’s differential list of possibilities.
My Own Story
I was an RN, CDE teaching people with diabetes for more than seven years when our daughter Emily, age 9, appeared to have a stomach virus, but was actually in diabetic ketoacidosis (DKA). She went from the first bed in the community hospital to an emergent transport to a waiting elevator at CHOP in Philadelphia. Having lectured on DKA, I knew why they got the Mannitol and placed it in her ICU room ‘just in case’ (brain edema). We have no family history and several of us had a stomach virus. It was a harrowing 24 hours that ended well.
Another daughter Kate, age 12, same year, was thirsty and needed to urinate often that December 24, 2001. I knew. I suspected with that second glass of juice and her being tired-my competitive swimmer and athlete was tired! We were in and out of CHOP the same day because she wasn’t ill, and we were practiced.
In July, 2018, our daughter Megan, age 20, had been working out with her sister and the ‘Tone it Up’ trainers online. “Show mom your muscles, Meg,” shouted Emily. I suspected at that moment and shared my suspicions. What Megan attributed to her workout, increased thirst, urination, and thinness, I attributed to potential diabetes. Sunday morning she asked me to check her blood sugar because the thirst and urination became even more frequent; 328mg/dl. Devastating for us all, this was clearly a diagnosis of diabetes. She was in and out of my Emergency Department in less than four hours because she wasn’t ill, and we were practiced.
Our House Resolution
We will announce a House Resolution on November 13, 2018. We will request state funds for research and awareness of type 1 diabetes. Terri H. Lipman PhD, CRNP, FAAN, Professor of Nursing in Pediatrics, Pearlman School of Medicine, University of Pennsylvania, will share recent trends from statistics of type 1 diabetes from her registry in Philadelphia. We will continue to mourn with the families that weren’t as fortunate as my family, who weren’t aware, who weren’t practiced. Their stories had a different ending, a tragic ending. We will work to create policy and practice changes so that these tragic endings are not repeated.
We have one more child, Jay, age 15. At birth we submitted his cord blood for a study, the TRIGR trial. This study is targeted to those who are genetically at risk to get type 1 diabetes. For ten years they assessed his blood work, diet, and illnesses. He has remained clear of autoantibodies, thus far! You know we are quick to check him with any illness or frequency. This is just what it takes to save a life. Jay was returned to the study after Megan’s diagnosis; two days ago we received word that he remains without autoantibodies. This is no guarantee for his future although he remains hopeful he will never get type 1 diabetes!
Daily, in my work at the Lankenau Medical Center, I see patients in DKA. There is much we can do to increase awareness of the early signs and symptoms. The United Kingdom speaks of the 4 T’s: Toilet, Tired, Thirsty, and Thinner. I think that is a great campaign and one we can develop with graphics so that no matter the literacy level, we can help identify someone at risk.
Change is Coming
We will help implement early detection. We hope to achieve elimination of all late diagnoses of type 1 diabetes.
There is an emotional component of carrying the larger cause of these drastic circumstances that change a family forever. “As you advance policy for someone else, it takes courage and strength to do this,” Senator Patrick Browne in speaking of Deborah Healy, M. Ed., our loyal advocate in this crusade. Please join us in Harrisburg, November 13, 2018 at 1pm. Please join us in our effort to create change, so that no one may ever suffer such a tragic loss again.