We the undersigned - D-Blog Week Day 2

Fourth Annual Diabetes Blog Week! (bittersweetdiabetes.com)

Today's Prompt: Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change?

I based my "fake" petition on a real Change.org petition. I am only partly joking.

As an adult, my life was turned upside down when I diagnosed with Latent Autoimmune Diabetes in Adults (LADA) or Type 1 Diabetes. But I faced this life-threatening disease with strength, courage and perseverance despite being subjected to ignorance and misconceptions. It is with their future in mind that I file this petition to bring clarity to two very different diseases - Adult Type 1 and Juvenile Type 1 Diabetes. The facts surrounding both of these conditions are increasingly confused by the parents of Type 1 diabetes. Revising the type classifications to more accurately reflect the nature of onset for each form of Diabetes -- childhood versus adulthood -- would reduce the confusion and would not only benefit those living with both diseases, but it would allow awareness to be raised in a clear manner. I hope that you will join me in this effort.

Adult Type 1 Diabetes and Juvenile Type 1 Diabetes are two very different conditions, yet their names are only distinguished by a word. Their 'type' is rarely if ever, clarified when discussed by parents of children with Type 1 diabetes. This leads to widespread confusion surrounding the differences between these two forms of Diabetes. My petition addresses this issue within four primary goals:

  • To end the widespread misconceptions about Juvenile and Adult Type 1 Diabetes
  • To allow advocates of both diseases -- adults and the parents of children -- to properly educate the public and bring awareness to their unique form of Diabetes
  • To facilitate more effective fundraising to meet the specific goals of each type of Diabetes

The misconceptions about Juvenile Type 1 and Adult Type 1 Diabetes start with the fact that Juveniles becomes Adults on their 18th birthday. With no mention of 'Type', the public perceives all Type 1 diabetes as being the same. This misconception is especially dangerous for Adults with Type 1. They do not yet have a voice to protect themselves from the ignorance and confusion that is putting their lives at risk. Teachers, coaches, medics, nurses, and others involved in caring for Type 1 children often share the same misconceptions as the public and do not think of Juvenile Type 1 as different from Adult Type 1. Dismissing a child's Type 1 Diabetes as less than a critical condition, as compared to an adult's Type 1, could result in a life-threatening situation in a matter of minutes.

Unfortunately, the incidence of Juvenile Type 1 is also on the rise; but unlike Adult Type 1, the public awareness campaigns for Juvenile Type 1 do not reach their full potential because of the confusion caused by using the same name.

Finally, the lack of distinct names for the type classifications for Juvenile Type 1 and Adult Type 1 has created an artificial camaraderie within the Diabetic community. There is a perception that one 'type' is the same as the other. This should not be the case. It is time for new names, uniquely focused advocacy, an end to misconceptions, and goal-directed fundraising. I am not requesting a significant disease reclassification. I am simply requesting new names that properly reflect the nature of onset for Juvenile Type 1 & Adult Type 1 -- something not accomplished with the current name.

A name change is not a monumental task. It has been done before. The time has come to do it again. The time has come to do it in a way that respects the opinions of those people living with these two similar, yet very different diseases.

Share and Don't Share - D-Blog Week Day 1

Fourth Annual Diabetes Blog Week! (bittersweetdiabetes.com)

Today's Prompt: Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?

Hi Doc, thanks for dropping by my bit of the web. It's mostly filled with my ramblings about Apple and photography and other tech stuff. I write about diabetes-related things here as well. Things I try to talk to you about but either forget or for some reason you don't understand where I'm coming from. While you are here, there are some things I'd like to share with you.

If you poke around the site, Doc, you'll notice that I'm a geek. I'm one of those people who uses technology to make my life easier. I don't like doing things the hard way unless the hard way is better in some regard. So, yeah, I record all my data -- meals, BG readings, insulin dosage, etc. -- in apps. These apps allow me to spot trends like my average BG rising over two weeks or that my BG in the morning is unusually high but drops right before lunch. These apps allow me to share the data with others. Like, say, my physician. You.

But, it seems you have no interest in that. I couldn't believe it when you asked me to keep a paper log book! Like WTF! Is it 1953? So you think my life will diabetes will be better because I can carry around a notepad and a pencil with me everywhere instead of Apple's latest iPhone? Hey, Doc, check your BG. Perhaps you are in a hypoglycemic stupor. I know I've told you already, but it requires repeating -- I don't do lo-tech. I'll have a printout for our next appointment.

As a geek, I keep on the latest diabetes-related tech. I don't have an insulin pump or CGMS, but I do know which models are on the market, which are newer and what cool features they offer to help the person with diabetes have a more comfortable life. I wish I had an insulin pump to try out for a few weeks to see if it's for me. Or a CGMS. Come on Doc.

I'm doing great with MDI but the sometimes I wish I didn't have to carry two vials of insulin, a lancing device, test strips and a glucose meter with me EVERYWHERE. It would be nice if you even knew what diabetes meters were on the market. I think it's sad your assistant knows more about that than you do. And she's also willing to tell me how to get strips on discount. You're not doing a good enough job of keeping in mind. I'm feeling slighted.

One more thing before you walk out to ignore your other patients. There is something I haven't been telling you. I've started to look around for other doctors. Yeah, Doc, you're replaceable.