As I received so many words of kindness and thanks for the work that Perle is doing, I truly want to thank each of you, who knows the pain and fear of this disease, and your friends and families. Each day, it is you, those who live with diabetes and know that us doctors, even those experts like me, don’t have all the tools to get rid of this disease, yet!
The courage I see from each of you is ever present— just having to deal with the day to day management of diabetes in the midst of going to school or work, in the midst of being a kid or young adult or mom or dad or grandmom or granddad, in the midst of the holidays which can be both stressful and joyful.
As the end of 2015 quickly approaches, I know of no books that explain why we don’t have the keys (at least not yet) to reverse the underlying cause of diabetes, which is too few beta cells. Many times each week, I hear doctors and nurses call me because they have a patient who is “Noncompliant” with their diabetes. This is a red flag to me that the doctor or nurse doesn’t understand this disease. Saddest to me is when practitioners, caring for children with type 1 diabetes blame the parent or the child. There isn’t a parent in the world who has a child with type 1 diabetes who wouldn’t doing anything it took to get their child off the glucose roller coaster.
Over the years, I have learned from you that diabetes is not a disease about a noncompliant patient nor parent. Diabetes is a disease about a noncompliant pancreas. Each of you has given me a beautiful gift. You have given me encouragement and ability to see diabetes differently.
How can we blame patients or parents of children for not being able to manage a disease that is this complicated and confusing—and even confusing to doctors. I admit that many times a day, I don’t have the answer for patients with this disease. I do my best to help make suggestions, but there is not a single drug, including insulin that fixes diabetes.
I gave a talk recently to physicians. I completely changed my talk and had to talk about diabetes in the most elemental terms that I could possibly think of because no one in the lecture hall chose the correct answer when I gave the following multiple choice question:
Which hormone is secreted in equal concentrations as insulin from the beta cell and is absent in type 1 diabetes?
The answer is Amylin.
I thought for a moment and went back to a conversation that I had recently with a friend who doesn’t have diabetes and isn’t a medical person. I tried to explain what our research in type 1 diabetes. It was so hard to do. We got out a paper and pencil and what we came up with was the story I told the doctors about diabetes.
We drew a big farmland with farmhouses on it. The farmland was the pancreas and each farmhouse the islets, each with 5 bedrooms. Each of the bedrooms within the farmhouse makes one or more hormones necessary for glucose levels to stay normal. Hard to believe, but for those who don’t have diabetes, 95% of glucose levels throughout the day and night are less than 120 mg/dL. It takes more than just insulin to do this, even though, without insulin, it is impossible to live, but the other 5 hormones made within the different bedrooms, play an important important.
In type 1 diabetes, there is autoimmune attack on the beta bedroom— which makes both insulin and amylin and ultimately, when the beta bedroom no longer functions, none of the other bedrooms function either. Autopsy studies in both type 1 and 2 diabetes show that patients with diabetes are not just missing beta cells, but missing entire islets.
At Perle, we are working on making new farmhouses from the beautiful green pastures containing plenty of progenitor cells (seeds) in the grass around the farmhouses. Two studies have show that even after 20 years of type 1 diabetes, new islets can be formed from the ductal pancreatic tissue outside the islets. We are also building picket fences around the houses to protect the beta cells from immune attack.
Thank each of you with diabetes for inspiring me and Perle to picture a world where there is no diabetes. Our mission is insulin independence. May this holiday season bring each of closer to all of our dreams. We are seeing these dreams become reality! Thank YOU!