November 9, 2010 is the 6th annual D-Blog Day as created by a fellow diabetes blogger, Gina Capone. This year is my first year participating and she has asked us to tell 6 things about diabetes we want others to know. While other bloggers are writing about insulin shots, exercise, and carb counting, I feel like my lot in life has been diminished. We were the lucky ones. We had the kids who were able to go off of insulin. But we still understand the fears. We still get mad at the uneducated myths that are perpetuated about all diabetics. So here are 6 things about Neonatal Diabetes I want you to know.
1. No, my children are not cured. Just as insulin is not a cure for a Type 1 Diabetic, Glyburide is not a cure for Neonatal Diabetes or even Type 2 Diabetes. It is a life line for them. They will always have to take it. They may not die as immediately if they don’t have their medicine, but they could never live on a desert island like Tom Hanks for 4 years and survive! 🙂
2. Neonatal Diabetes happens because of a mutation in a single gene so it is classified under Monogenic Diabetes. It is estimated that as much as 1-2% of all young people with diabetes may have a Monogenic form of diabetes and not even know it. Neonatal Diabetes makes up about .1-.5% of all diabetics, but again, the numbers are only estimates because there are more people out there with this that don’t know. If you aren’t sure, ask. Disclose to your endocrinologist everything about your diabetes. Research.
3. Yes, my children can have ice cream and cake for their birthday (or any day of the week for that matter). Just like all diabetics, we have to monitor a little more closely after binges like these and sometimes we have to give more medicine, but it’s not an impossible situation. Everything in moderation.
4. Using oral medication for Neonatal Diabetics is a relatively new treatment. There are just a little over 400 cases worldwide and just around 70-80 here in the U.S. We are guinea pigs. We don’t know for sure if this treatment will last forever. It is not a perfect science because humans don’t react quite the same as lab rats do. We are a work in progress, so 20 years from now, maybe we will have just a little bit of insight for the parents of the newly diagnosed Neonatal Sweeties.
5. No, I didn’t have Gestational Diabetes. Researchers still don’t know exactly what causes this mutation or even when exactly it happens. Apparently, either my husband or I have the mutation in our reproductive organs since both of our children have it. This is extremely rare to have siblings with the gene mutation without the parents having the mutation (I think we are the only family like us in the U.S. and there are maybe 4 others worldwide).
6. No, they will not grow out of it. They will have to take medicine and check their blood sugars for the rest of their lives. If they have children, they have a 50% chance of passing it on. This is one of the many reasons I am planning on getting my PhD and joining the search for the cure. I know that searching for a cure for one type of diabetes can help others.
Note: I have done a lot of research on my own, but I am not a doctor. Statistics for this rare type of diabetes are all estimates and may not be accurate. Always talk to your doctor about any changes to your diabetes treatment.