Today at the ‘Mine, we’re thrilled to host longtime type 1 Joyce Lofstrom, who was diagnosed just after moving to the Chicago area in her mid-20s, and has worked in journalism, healthcare IT and public relations. Notably, she worked for 16 years in the Electronic Health Records (EHR) field and has some insightful observations about that issue.

These days, one of her clients is Allscripts, whose chief medical officer has done some fascinating new research in the type 2 and prediabetes space. Along with Joyce’s story, we’re excited to hear about that today…

I was six months into my dream job – newspaper food editor and restaurant critic with a suburban newspaper in the Chicago area. At age 25, I moved to Arlington Heights, Ill., from Kansas City, Mo., my hometown. Another reporter and I were enjoying lunch at a local deli for one of my restaurant reviews.

“You better find out what’s wrong,” she told me after I drank my seventh or eighth glass of water at the meal. I knew she was right.

In the past month, I had lost 15 pounds, a huge achievement for me, because I always wanted to shed those extra 10 pounds. But I was always thirsty and had even commented to someone at the newspaper that I thought I had diabetes due to this unquenchable thirst. She told me it was the Chicago humidity.

That very February 1978 night in the emergency room, I learned I did indeed have type 1 diabetes and a blood sugar of 650 mg/dL.

Understanding Why Me and Finding Support

It’s a question I think any of us as a Person with Diabetes (PWD) asks over time. I am adopted, and when I was diagnosed, I did not know my birth family’s medical history. I do now — no one has or had diabetes.

Leaving Kansas City was both exciting — with this new job — and challenging, without the support of close friends and family. I did have two close girlfriends from college who lived in the city, a 30-minute drive or train ride, my usual weekend trek. But I was lonely, and perhaps depressed, which I now interpret as stress.

Plus, I did not have a doctor that I could call on when I was diagnosed. Luckily, Beth, my dietitian friend in the city, referred me to her doctor, who treated me for my diabetes, and subsequently, for thyroid cancer, which he discovered shortly after my diagnosis by finding a lump in my neck.

I have two children, two boys, who were born almost seven years apart: John, age 32, and Max, who died in 2016 at age 22 from testicular cancer. My pregnancies worked, because I was in good health and relied on physicians who knew how to care for me: a high-risk obstetrician who coordinated care with my endocrinologist. Both boys, as well as my husband Chuck at the time (now my ex- but still a good friend) and my partner Bill and his son Will have supported me in my diabetes journey.

Over the years, I have volunteered for the American Diabetes Association, when I lived in Kansas City, and sought out people through volunteer efforts, sometimes related to diabetes and sometimes not, such as with the Public Relations Society of America (PRSA).

In graduate school, my professor introduced me to a young woman who had just been diagnosed with type 1 diabetes. She and I remain friends and have shared each other’s diabetes journey during these 40 years. I belong to a support group in the Chicago area called Type1 Diabetes Lounge that another friend from my church told me about. I have been helped by many people through connections that solidified long, lasting friendships, camaraderie, and often, humor.

Evolution of Electronic Health Records

I spent many years in food/nutrition public relations, working for a farmer’s cooperative, agencies and nonprofit organizations in Kansas City, Columbia (Mo.), Denver and Chicago, including a brief stint with the American Diabetes Association in Columbia.

Then, I transitioned to healthcare and health information technology communication as Senior Director of Communications, at HIMSS, a nonprofit organization in Chicago focused on improving healthcare with information and technology — that is, use of electronic health records by clinicians and hospitals. After almost 16 years at HIMSS, I retired in May 2018 and opened my own public relations consulting business.

There was a quite a bit of change over the years in electronic health records. When I joined HIMSS in late 2002, I was new to the world of health IT, and we focused on adoption of electronic health records. The use of electronic health records and other health IT systems evolved over those 16 years, especially with the passage in 2009 of the American Recovery and Accountability Act, which included a measure for what was known as the ‘meaningful use’ of electronic health records. As of 2017, more than 95% of all US hospitals use certified EHR technologies, according to the Office of the National Coordinator for Health Information Technology.

Now, the healthcare community and government want to make sure all IT systems can talk to each other by electronically sharing information across hospitals and medical practices no matter where you are. That data sharing will make it easier for us, as PWDs, and also, for healthcare professionals, who track not only our diabetes health, but populations of people with diabetes or other chronic diseases.

For example, data from an insulin pump or continuous glucose monitor tells the story of our diabetes health over time. How does that data become part of our own personal health record? How can we share that data over time with a new physician in a new location? Information sharing of our health information requires interoperable data exchange, similar to what happens at an ATM machine when accessing your bank account or making an airline reservation online. In addition, while we are all patients, we also are consumers of healthcare as well. More people want to “comparison shop” for healthcare services, that is, patients as consumers want value in the healthcare services they purchase and use.

Researching the Progression of Prediabetes

Now, I’ve established another diabetes connection working with Ritz Communications and Allscripts, a health IT company whose Chief Medical Officer, Dr. Fatima Paruk, has made great strides in her research on the progression of prediabetes and in public health.

Her research looked at uncovering patterns in the progression of diabetes and prediabetes and identify additional risk factors that can contribute to how quickly prediabetes progresses to diabetes, such as the county where people live, access to healthcare and screening, and local food consumption patterns.

She began her research with an attempt to validate current government research from the Centers for Disease Control which found that 1 in 3 people with prediabetes will convert to diabetes in 5 years. New findings found far more rapid rates of progression from prediabetes to diagnosis of diabetes, and that results indeed differed significantly with geography and race, among other factors.

The results showed: Among the 4.8 million persons with prediabetes studied, a significant portion progressed to diabetes, because they were neither being identified as at-risk for diabetes or not being managed. Along the way, these people gained weight, their A1C continued to rise, and ultimately a new diagnosis of diabetes was made. Dr. Paruk’s team continues to study this population using big data analysis.

We have also worked to integrate the upgraded Diabetes Standards of Care, published by the American Diabetes Association, into guidelines that can be used in electronic health record systems at Allscripts and other vendors.

Working with T1D on Board

While I worked consistently and full-time during my career, I also experienced the demands anyone with type 1 diabetes faces when managing a chronic disease, a job and family. I was open about my disease, and let my co-workers know that I may need their help, if and when my blood sugar dropped.

That is, despite all the high-tech tools and real-time measurements of blood sugar, I still at times overcompensate on my insulin, so my blood sugar doesn’t soar. However, with that approach, it drops, because I don’t always correctly manage the food intake with the insulin dose. The resulting low blood sugar means I have to catch it before it drops, and if I don’t, my family, and yes, sometimes the paramedics do.

I credit those many people who found orange juice for me (sometimes from the CEO’s private refrigerator!), stayed with me until I was okay, called 911 in some cases, and basically, looked out for me.

Complications are my biggest fear — at the time of diagnosis and now. So far, my right frozen shoulder came back to almost normal with physical therapy and continued exercise at home. Otherwise, everything else is working and in good shape — for now.

I have been fortunate with the support of friends, family and co-workers over these years. I am a person first, and yes, I have type 1 diabetes. That philosophy has made a positive difference for me.

Thanks for sharing your story, Joyce!