Ignorance

What a week this has been.

Cutting to the crux of the week, my brother was admitted to the hospital on Tuesday for diabetic ketoacidosis (DK). A life-threatening complication for previously undiagnosed or uncontrolled Type 1 Diabetes.

YES, Type 1 Diabetes (T1DM for short) can have an adult onset. It's not only a childhood onset disease, a common myth. T1DM used to be called Juvenille Diabetes. A name that now is insufficient in it's description.

I was diagnosed with T1DM when I was 24. Now my brother's pancreas decides to stop producing insulin as well at age 33.

While I was mortified, distraught, angry and depressed when I was diagnosed 11 years ago, I have learned to manage the disease and not have it manage me. I live with it everyday and really it's just another part of my life. My daily routine changed somewhat, such as checking my blood glucose, counting carbs, taking insulin, and maintaining a healthy diet. But really, it's just all a part of me now.

Knowing what I know now about the disease I feel like I'm in a great place to help my brother. I hope he doesn't have to ever feel lonely like I did. And I hope he doesn't ever feel in the dark about this disease.

Unfortunately for my brother, his diagnosis experience wasn't what it should have been 11 years post my diagnosis experience.

My diagnosis experience while full of fear and pain, was informative and put me on the right track towards health.

After I finally got a blood sugar check, after weeks of being sick and losing 30 lbs in three weeks, my somewhat incompetent general practitioner admitted me into the ICU. I spent a total of 3-4 days in the ICU, while my glucose level was brought down and my potassium level was increased, and another 5-6 days in a normal hospital room, learning to care for my "new" self. I saw an endocrinologist after my ICU experience, in the hospital, and he discussed my autoimmune disease condition. I had the diagnosis of T1DM and Hashimoto's thyroiditis.

I met with a nutritionist, a diabetes educator, and was educated about carb-counting, calculating insulin boluses, and all the ins-and outs of this very scientifically studied disease. I was sent home with all my new equipment, two types of insulin for multiple daily injections, and the home phone number of my new endocrinologist. We talked daily every night that first week. I would give him my day's numbers (glucose levels and insulin doses) and he would help me adjust and fine-tune my dosing regimen. I saw him every few weeks those first few months. He really was my life-line and primary source for education.

That was 11 years ago. Diabetes management for T1DM patients has changed for the better even since then. I'm now on a pump. I've witnessed a few new types of insulin on the market that help with even better glucose control. And now we even have sensors that can help us continuously see our glucose levels in few minute increments throughout the day. Our tools and knowledge base about T1DM is significantly better today than a decade ago.

Contrast my experience, 11 years ago, with my brothers, 5 days ago, and you would think we're in 1980.

He was admitted with diabetic ketoacidosis (a condition I stated before that ONLY occurs in T1DM patients). He was never seen by an endocrinologist. In fact there isn't an endocrinologist on staff at this hospital.

He was given very minimal instruction on how to count carbs and calculate insulin doses. They only corrected his blood sugar, never proactively prevented it from doing the up and down roller coaster it will do without a proper insulin regimen.

Then once his potassium level was "stable" he was discharged without the necessary insulin required by a T1DM patient (fast acting insulin), no insulin regime, no supplies. He's discharged with paper prescriptions for one type of insulin (vital and needed to maintain a basal level of insulin, but needed in conjuction with a rapid-acting insulin for meal boluses), T2DM insulin-aiding pills (something that WILL NOT help a person who doesn't produce insulin on their own, but it is a routine prescription for T2 diabetics who have an abundance of insulin in their system), syringes, a meter, and an ignorant response from his "health provider" (a self-proclaimed expert in diabetes because she has "lots" of diabetic patients) when asked about why she was providing pills for a T1DM patient. She stated that pills are easier than injections for diabetics, and that many of her patients never had any luck with endocrinologists.

Then to top it all off, my brother demands a copy of his medical record before he is discharged, and his request is refused. He walks out without proof of the incompetent care he received.

I am livid.

This whole week I have been shaking with anger. I haven't slept much. I am shocked and appalled that any health provider today doesn't even know the very significant differences among T1 and T2 diabetes.

When my mother or brother asked the "doctor" if she knew what the American Diabetes Association is she drew a blank.

She also said she wasn't sure if he had T1DM yet. IGNORNANT.

She didn't need to order a test (of which she could have to confirm T1DM...an antibody test that shows a body has antibodies present that attack insulin producing cells, antibodies that are ONLY present in T1 diabetes patients because it's an Autoimmune disease, not a life-style inducing disease or condition). She already had a fool proof way to know that he has T1DM. He had Diabetic Ketoacidosis, a condition ONLY T1DM present. T2 Diabetics do not present with this condition.

I can rant more. Really. In fact, I don't think I'm going to stop ranting about this until I know that all health providers, particularly ER and ICU providers, know about the differences among T1 and T2 patients. If they don't know how to treat the two very different diseases, they shouldn't be treating them. They should send T1 patients to hospitals that have Endocrinologists knowledgeable in ALL diabetes diseases and other autoimmune diseases.

For years I've been content taking care of myself as best as I can. I have an amazing doctor (who herself is a T1DM patient). I try to keep up on all the latest and greatest advances in diabetes management.

I've often talked to friends of mine in the health care industry about my experience with T1DM. And I'm often told I should become an advocate or diabetes educator.

After my first years living with the new reality of what it meant to have T1DM, after wading through the anger and fear, I came to realize I didn't do this to myself and I was given this disease for a greater purpose. But I haven't really done anything with that realization until now. Other than give myself a break that is, and let go of the anger.

I know I can help my brother learn all that he needs to in a faster way than I did. I can share all the tips I've learned over the years to maintain healthy glucose. I can reassure him he's not alone in this new journey.

But I also think it's time for me to get off my knowledgeable and opinionated ass and share my passion with those who need to hear it. Health providers need to be educated. Patients need to have advocates. And the general world needs to know that T1DM is NOT the same as the very prevalent T2DM.

I am sick of Diabetes being Diabetes. Yes there are ONLY around 1 million cases of T1DM in America. Compared to the 8-12 million known cases of T2DM. And yes T1DM is MOST often diagnosed in children. But it's not a childhood disease. It's an autoimmune disease. It's a genetically-linked disease that CAN present in adulthood. There are even cases of it being diagnosed in individuals well into mid-life...even 50s and 60s.

We know what causes T2 Diabetes. Or at least we know how to prevent it for the most case. We know that obesity and excess fat cells inhibit T2DM patients from utilizing their system's insulin. They usually have an EXCESS of insulin in their system. As opposed to T1DM patients who have little or no insulin being produced in their bodies. Therefore T2DM patients can sometimes get rid of the disease and it's symptoms by losing weight, exercising and eating more healthy and balanced diets.

We cannont PREVENT T1DM nor do we have a way to cure it yet. There isn't science yet that can determine when a persons body and immune system will turn on itself and hinder insulin-producing cells from making insulin. And we don't have a way to make the body start producing insulin again. Hence T1DM is often called "insulin-dependent diabetes" for a good reason.

T1 Diabetes is an autoimmune disease like Multiple Sclerosis, Lupus, Addison's, Grave's disease, Hashimoto's Thyroiditis, and roughly 100 more diseases. Some rare, and some more common that T1DM.

T1 Diabetes needs a new name.

This explanation is all very basic. Basic info all health providers should know and they don't.

SO, if you are a health provider or know one, please do your part to be educated on this life-threatening and misunderstood disease. Read more about autoimmune diseases. Learn about them. Understand how they affect individuals. Learn about how individuals are often diagnosed with more than one of these diseases.

And for the sake of T1DM patients everywhere, learn how to appropriately treat patients with the autoimmune disease called Type 1 Diabetes.

You've been forewarned. Now I'm getting off my comfortable soap-box. Now it's time to take this passion to the world. Watch out, there's a livid Type 1 Diabetic wanting to kick ass and take names!