It’s been over 35 years since my family first learned of type 1 diabetes (T1D). At the age of three, my younger brother Steve was diagnosed. As many families will describe, we’d heard of diabetes, but never really knew or understood exactly what it was and what the treatment entailed. In 1984, at the age of 13, I too was diagnosed and was welcomed to the world of insulin injections and blood glucose monitoring. The discovery of insulin in the early 1920’s was an incredible advance as it saved children from what was, until that point, a universally fatal disease. But, what was learned quickly, and what my family and every family understands upon a T1D diagnosis is insulin is not a cure for T1D and that living with T1D can be very hard.
Insulin is not a cure. Because of the way we deliver insulin – through the skin by injections or with a pump – it is very difficult to restore what nature does so exquisitely. What that means in practice is that it is very difficult to maintain normal blood sugar levels. People with T1D walk a tightrope because too much insulin at the wrong time can cause hypoglycemia. Hypoglycemia can cause disorientation, loss of consciousness and unfortunately still can cause death. And, hypoglycemia can happen suddenly and sometimes without symptoms in people (hypoglycemia unawareness). Hypoglycemia is the main barrier to “tighter” glucose control. We want tight control because excessive sugar in the blood over time damages tissue and this damage can lead to diabetes complications including eye disease, kidney disease, nerve and heart disease. What we know from the scientific literature is that unfortunately most people with T1D still struggle to achieve tight control and that hypoglycemia is still a real risk. This is what we are so committed at JDRF to improving lives and ultimately curing this disease!
In my family, hypoglycemia was a huge challenge for my brother. He has hypoglycemia unawareness and had a number of seizures and ambulance trips to the hospital as we grew up. Witnessing a loved one having a seizure due to diabetes is traumatic and incredibly scary. We also had challenges as teens managing our diabetes. The current data shows that the teenage and young adult years are the absolute hardest for diabetes management. This is because of a number of factors – hormones during puberty change insulin requirements, peer issues, deprioritization of diabetes management, burnout, etc.… Adding diabetes on top of just being a teenager is tough!
I recently read the book Elle and Coach by a tremendous diabetes champion Stefany Shaheen. Stefany tells the compelling story of her daughter Elle’s T1D diagnosis and how a diabetes alert dog – Coach – has transformed their lives. I always well up with tears as I read parents describing the diagnosis of their child with T1D and this was no exception. The journey from that point really tells the story of how their family has taken on the challenges that I describe above and has found a solution that has been tranformatively positive for them. As I scientist, I’m often asked about the reliability of diabetes alert dogs. I’m certainly not aware of any randomized trials! But, that is not the point here. The point is – as all readers who live with diabetes in their families know – that this disease is a journey and it impacts the entire family. And, ultimately we want solutions that help make our blood sugars better and make our lives easier. Coach has done that for Elle and the Shaheens, and that is wonderful.
I’m proud to work at JDRF and that we are driving towards Turning Type 1 to Type None. There are so many exciting advances on the horizon – artificial pancreas systems, glucose-responsive insulins, encapsulated cells, and preventative therapies. The ultimate metric for success is people with diabetes doing better. In the near-term, JDRF provides resources to help with our journey with T1D. We have tool-kits – such as a teen tool kit – that can help throughout various life stages. I commend Stefany and Elle for sharing their story. We are all part of a broad diabetes community and gather strength through success stories such as this.
By Aaron Kowalski, Ph.D., JDRF Chief Mission Officer, Vice President Research