I’m on the Amtrak Acela, enjoying a train ride with Manny Hernandez and Kerri Sparling (a couple of well-known diabetes bloggers). I’ve been determined to know more about this increasingly prevalent disease, and given that this weekend includes World Diabetes Day, I thought I’d conduct an in-train interview with these two friends about living with diabetes. So here, they speak from the heart to the rest of us who may be quite unaware of what this disease is all about.
SW: Kerri, you were diagnosed with diabetes at about age 6. Tell me how people begin to discover that there’s a problem, leading to a diagnosis of diabetes.
KS: There’s more than one type of diabetes. I was diagnosed early on with Type 1 diabetes, which means that my pancreas basically stopped producing insulin. For me, the first indicator was onset of bed-wetting in first grade, which can be a symptom of high blood sugar. A couple of months later, a urine test confirmed that I had Type 1 diabetes.
SW: Why would someone’s pancreas stop producing insulin?
KS: It’s an auto-immune disease, and the causes are still a mystery. For me, the doctors figured there was probably some hidden genetic predisposition, triggered by a virus.
SW: Was your experience similar, Manny?
MH: Actually, no. Sometimes there’s a much longer delayed fuse on the onset, so I didn’t have symptoms and wasn’t diagnosed until I was an adult. My type of diabetes is referred to as LADA – Latent Autoimmune Diabetes in Adults. This is often misdiagnosed as Type 2 diabetes because of the later onset, when in fact it’s a form of Type 1 (we sometimes refer to it as Type 1.5).
SW: So in your case, and for many other people, there’s not someone “at fault” – this disease was not caused by bad parenting or too many lollipops…
KS: Absolutely not! Type 1 diabetes is not my fault, my parent’s fault, or anyone else’s fault. It’s a disease that I have to deal with and manage, but there’s no-one to blame.
SW: But do you still feel a sense that people, out of ignorance, try to assign blame for your diabetes?
KS: Yes, and that’s because there’s a lack of awareness about the causes of diabetes, and the various types of diabetes. Part of managing diabetes is managing the disease, and part of it, quite frankly, is managing misconceptions.
SW: In the simplest terms, what are the major differences between Type 1 and Type 2 diabetes?
MH: In Type 1, you have a malfunctioning pancreas, which no longer produces insulin. In Type 2, the body develops resistance to insulin – your body still produces it, but insulin is not able to do its job properly. Both are called diabetes, but the treatments and management strategies can be quite different.
SW: You’ve both explained to me the day-to-day, hour-by-hour management of diabetes, including a mix of regular insulin injections (or use of high-tech devices to pump insulin into your system); monitors; test strips, etc. There’s really no relief, no let-up, from keeping blood sugar levels under control, is there?
MH: No. Uncontrolled diabetes can lead to all sorts of additional health problems, so it’s vital to try to maintain consistent control. Perfect control is impossible, but good disease management is increasingly possible with the right tools and approaches. And even then, diabetes sometimes decides to do wacky things.
SW: If you could get one message across to those of us that don’t experience this disease, what would it be?
KS: That even if we don’t look sick, we still deserve a cure. Managing diabetes is a marathon, with the constant threat of health complications at every step. We have to try to do the best we can with a uncooperative pancreas, and we hope that someday we can move from unceasing measurement and management to a cessation of the disease.
MH: I would advise people to get connected – there is a very active and supportive diabetes on-line community (DOC) that can become a very valuable source of help and information – be sure to share what you’re learning with your physician.
SW: I have a lot to learn. At least I understand that I’m not going to “catch” diabetes from a doorknob or anything, right?
KS: You realize that if you keep hanging out with us your pancreas will stop working… :>}
SW: Ummmm…hey, pardon me while I head over to the Club Car…!
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