I wrote this for my Facebook but thought it was worth reposting here in my blog. It is intended to shed some light on some of the most common questions that I get on a regular basis from various people. If you see something on here that you did not know, or if someone shares something with you that is contrary to the truth, please share it with your friends, and family. There are a lot of people who are ignorant about Type 1 diabetes and we, in the diabetes community, are working hard to change this for the sake of our children. Our children are normal little boys and girls who are trying to cope with a chronic disease in a world that doesn’t understand it and have very negative ideas of the disease. Please join us in trying to dispel the myths, many of which are often perpetrated by the media.
“My dear friends,
I know most of you have read enough of my posts to have some idea of these things. But since I have to tell people these things several times a day I thought I would save the breath and tell you guys .
1. There is no known cause for Type 1 diabetes. Even though they have ideas of what might cause Type 2, even it is a mystery to doctors. This means that there is also no known cure for diabetes. It is not going to go away with age, it is not going to be cured by a special diet (some diets can help people but not every body works the same), and no one did anything to cause Type 1 diabetes. The pancreas has failed. It is an ORGAN FAILURE. It is sick and not doing what it should do because the body has attacked it. It is an AUTOIMMUNE disease.
2. Yes, my two year old has diabetes. Yes, even little ones can get it. It is not just the old, fat, and lazy people who get diabetes.
3. Yes, he has to have insulin. EVERY SINGLE BITE HE EATS has to be counted and covered with insulin. Imagine keeping track of every bite you eat and every sip you drink. No cheating at all. No free foods. EVERY SINGLE BITE. Sure there are some foods that he can have without insulin (like string cheese) but there are few and they can only be had in small amounts.
4. That “fanny pack” you think is so cute, is not a fanny pack. Fanny packs were cool in the 80s. They are not cool or cute anymore no matter what anyone says. This has to be attached to his body 24/7 (bathtime is the only exception and that is when we change his insulin, site, etc.). He sleeps on it. He plays with it on. It is almost an extension of his body. Yes, I make him cute pouches. But that is because I feel he deserves to have something cute and fun to tote around his MEDICAL device that helps keep him alive.
5. Insulin is NOT a cure. It is treatment. And it takes a lot of work to figure out the right amounts of insulin the body needs. Especially at this age when his body is changing constantly.
6. Yes, he can eat fast food. No, it is not healthy for him. But its not healthy for you either. If you are seeing him eat a cheese roll up at Taco Bell then guess what? You are probably eating something that is at least as bad for you. Do strangers come up to you and tell you not to eat something when they are eating the same things because you are too fat or your blood pressure is too high or whatever? I don’t think so. So don’t judge me and my son.
7. No, ketonic hypoglycemia and type 1 diabetes are not the same thing. Although diabetics can have hypoglycemic episodes due to an overdose of insulin (see note above about calculating the right amounts) or due to what is known as the “honeymoon period” (where the pancreas is still functioning but barely and inconsistently), hypoglycemia is LOW blood sugars due to too much insulin. Diabetes is the inability of the pancreas to create insulin or to produce enough insulin which results in hyperglycemia or high blood sugars. Just because both cases can cause ketones, and ketones are dangerous, and just because it deals with the same organ, does not make them the same disease.
8. Yes, I do have to poke my child. No, I am not being mean. By poking his finger every time he eats (and every few hours) I am keeping him healthy and alive. I am making sure that his sugars are in target so that I can adjust his insulin (something he and his pancreas cannot do) accordingly. This is important because not having stable blood sugars can result in long term complications and even DEATH. So if poking my child’s fingers, squeezing a tiny bit of blood on a stupid stick so a meter can read it is mean, so be it. I’d rather be mean then KILL my child.
9. I know he looks healthy. For the most part he is. He gets normal illnesses like any kid. And yes, they land him in the hospital sometimes because his body has troubles fighting the diseases. But over all he is a very healthy, normal kid. He loves to play just like every other little boy, and has a very silly personality. He is just a normal kid with a faulty organ/autoimmune disease.
10. Don’t believe everything that you hear or read about diabetes. Diabetes is different for each person. Each person has different challenges and complications. It is a daily fight to keep my son healthy. But that fight does not look the same every day and does not look the same for us as it does for another child of the same age even. There are similarities but don’t assume because you know someone who had to have their foot cut off due to diabetes complications that my son will have to as well. We work hard to keep him healthy so that he will not have to face any of those unnecessary complications.
11. We see a specialist every 3 months and more frequently if necessary. This specialist is called an endocrinologist. Both of my boys with their very different pancreas issues have to see endocrinologists every 3 months to have their blood tested to get an idea of how they are doing. A very important number that is taken is the A1C. In the diabetes community we call this the “mommy report card” because it gives us an idea of the average of sugars over that three month period. If the A1C is good and it is not due to too many low blood sugars, then the doctors know that we are on the right track. But this is combined with blood sugar logs and other blood tests that show how the rest of the body is functioning.
12. Type 1 diabetes is rare in comparison to Type 2. 90% (or somewhere around there depending on the source) of diabetics have Type 2 diabetes. That leaves about 10% of diabetics who have Type 1 or one of the other more rare forms. However, there are a lot of people who have been misdiagnosed with Type 2 based on age when they should be classified as Type 1 (which is part of why they changed the name from Juvenile Diabetes). The symptoms and way the pancreas reacts is different. Some of the treatments are the same but they are different diseases.
13. My other children are far more likely to develop diabetes than the general population, as are any children Sherwood ends up having. So yes, I do worry a lot about my children developing diabetes. Since the only way of knowing that they have it is waiting until they are really sick, it is very stressful. We might catch it early but chances are they will not get any real help until they are sick enough to go to the ER and possibly the ICU. This is a serious disease that can happen at any moment for any reason. We do not know what triggers it. Therefore, we cannot work to prevent it or slow it down.
There is probably more that I want to say but this is it for now (I know, its a lot as it is!). Please ask if you have questions.
An Artificial Pancreas
PS. Please do not say “At least he does not have (fill in the blank for whatever horrible disease you can think of)” to a diabetic or a diabetic’s mother. Although your intention may be to encourage, this is not encouraging but is very frustrating. Diabetes is a very serious and DEADLY disease and should not be taken lightly.”
- The faces of diabetes aren’t always what you expect. Here are my boys in their diabetes blue on November 2nd.