This past weekend TJ, Tylie and I had the opportunity to attend a workshop for families and children with diabetes. Taya and Troy were unable to attend due to a volleyball tournament. Tylie had been asked to paint faces of the littler children there and to help with the children's part of the workshop. At the end, she and I were part of a panel of families talking about about the insulin pump.
Prior to this portion of the program, a local doctor presented on the current research in diabetes with the emphasis on T1. Before I share what I learned, I need to journey back to when Tylie was diagnosed so you can get the full significance of how far research has come and how important these projects continue to get funding. It will be 12 years in January that we first heard the words "Your daughter's pancreas no longer produces insulin. She has Juvenile Diabetes." We are thinking with a key word like "juvenile" she will outgrow this ridiculous condition. And, naive as we were, we asked when this would happen. We were told this condition was also called "Type 1 Diabetes" which means that her pancreas will never again produce insulin. Something- probably a virus- mistakenly attacked the cells in her pancreas where insulin is produced and destroyed them. This is different than "Type 2 Diabetes" which means your body doesn't produce enough insulin. This type of diabetes does not always require insulin and is largely treatable and preventable with diet and exercise. In order for her to get the energy she needed from the food she ate, we would need to give her insulin injections- everyday, more than once. We would have to check her blood sugar, everyday sometimes more than 8 times. That's a lot of poking! And, that doesn't even include the blood draws needed every 2-3 months.
Now, 12 years later, I can clearly remember sitting in her hospital room learning about the peaks and valleys of the two types of insulin she would need. In the morning, we would need to make a "cocktail" (not the happy kind) of NPH (cloudy) and Humolog (clear). She started out on the tinest dosage- under 2 units total. I kept thinking this microscopic dot of stuff sure caused a lot of trouble! She would take a shot in the morning and a shot of Humolog at supper and NPH at bedtime to carry her through the night. Then, we had to feed her based on those peeks and valleys- "feeding the insulin" we often referred to it. While giving us our lesson, our doctor told us- "There is so much research going on that in ten years you will be shocked by how far you have come." Holding my baby girl that day and a year and a half later her little sister, I desperately hoped this was true!
We continued with mixing shots for a couple of years and then a "miracle" insulin became available to us called Lantus. Lantus lasted 24 hours without peaks and could serve as a "background" insulin. The goal was to get rid of the dramatic highs and lows and then be able to give faster acting insulin at meal time to cover the food. We no longer had to be quite so tied to the clock and when these insulins became available in pen format our lives became that much easier. However, shots were still required and in Taya's case, sometimes up to 8 times a day. And, they were not fun. We kept hearing about this thing called the insulin pump. This miraculous machine that could hold insulin, calculate your dosage, and only need to be changed every three days. (Okay, I am simplifying here, but you get the picture.) However, there was also this thing called insurance that liked to put up road blocks. But, many letters and pages of documentation later- the girls got their own insulin pumps! They were started on Taya's 10th birthday- 8 years after Tylie was first diagnosed. What a blessing these little contraptions are for these kids! Our Diabetes Educator still remembers how excited Taya was when we came back for our first set change. She told her, "That was 17 shots I didn't have to take!" However, it was not a cure and 10 years later we heard the dreaded diagnosis a third time. He is now also on an insulin pump.
So- yes, things have definitely changed! And for the better- but it isn't perfect. It isn't a cure and it isn't a pancreas and it didn't stop it from happening to our baby boy. There are lots of bumps along the way and lots of room for human error. The pump is a great tool for the potential to successfully control diabetes but it isn't the answer. My kids are still responsible for counting every carbohydrate they eat, checking their blood sugar and putting all those numbers into this little machine that does the math for them and so that it can secrete the right amount of the magic insulin. But it doesn't account for extra activity, crazy teenage hormones, a set that doesn't work correctly or falls out at an inopportune time, or a sick day. All things that the body of a person without T1 does without an ounce of thought.
And, now, back to where I began. Research! Europe is so far ahead of the US in this area. The first closed looped artificial pancreas was started just this last week. Two places making great strides on this continent are Sanford Health and the University of Minnesota. (Those that know me may be shocked I would promote U of M, but remember it's only their hockey team I have a problem with!) Many studies have been successfully able to produce the cells necessary in animals but they can't get them to stop producing. (They become cancerous.) The one I found most interesting was the use of endometrial cells to create islet cells. This would eliminate the need for anti-rejection medication because a woman could use her own tissue. They have found that BCG- a tuberculosis vaccine- can be an effective vaccine if you are found to have the antibodies that predispose you to developing T1. The list is endless. JDRF- the Juvenile Diabetes Research Foundation- funds nearly 60% of the current studies going on in the US. 86% of all funds donated to JDRF go directly to research for Type 1 Diabetes. This is only possible due to the tremendous amount of volunteers and ongoing fundraising efforts. These studies also pave the way for insight into other autoimmune disorders. Links below are provided for some more reading on these studies and JDRF in general. These studies currently provide hope and I pray for the day the provide a cure!