Hi everyone. My 13yr old son was diagnosed with T1 almost 1 year ago. I have learned a lot from reading posts here, but I have not posted myself. Today I am doing so to share something that I think is very exciting. A fellow T1 mom, Jeanette Collier, and I have just filed a petition to revise the names of both Type 1 and Type 2 Diabetes to more accurately reflect the nature of each disease. We tried to do this in a way that benefits both the T1 and T2 communities. We sincerely hope that we have accomplished our goal to make this petition benefit all of us. We are very excited that Dr. Camillo Ricordi of the DRI has signed our petition and is promoting it on his FB page! We are 48hrs into this and have over 400 signatures. We just might be on the way to making change happen!
Please click on the link below to view our petition on change.org. In addition to adding your signature, please consider promoting our petition to all of your family and friends. You can send a link via email and/or you can post a link on FB, in other on-line communities, within a blog, etc.
I really hate complaining about the public not understanding my disease but in this case i have to say i friggin LOVE the idea!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! My frustration has gotten to a point where i simply tell people "I dont have a pancreas anymore because of my diabetes" People never understand "Oh im type 1, not type 2" but they do respond to "Oh im missing a vital organ and its function" I will share this link on my FB as well, i hope it passes, to be honest i have grown a noticeable dislike for type 2 diabetics because i feel they made decisions that led to their condition, while i simply lost all my health and had a heart attack while in perfect shape and while being a very responsible eater.
I have realized however that this is in no way a judgement on people suffering from type 2, its a judgement of how the general public doesn't understand how... down right unfair... our disease is. I did nothing, not one thing, AT ALL, to deserve my disease which holds me back and makes me struggle every single day of every week of every year for the rest of my life... How would it ever be fair that i have to be lumped in with people who made decisions that led to a condition which isn't even permanent? I don't know what you intend for the name or how you want to classify the two, all i know is this... You compare me to a type 2 diabetic... you mine as well be slapping me across the face. So i invite any change in the terminology.
The reality is that you have to be genetically predisposed to develop either type 1 or type 2 diabetes.
About 1/5 of people who get type 2 diabetes are not overweight. Overeating can definitely be a catalyst for type 2 diabetes developing, but only about 1/3 of obese people become diabetic.
And I'm seeing more and more clinical research that's questioning whether fat makes people become type 2, or if a type 2 pancreas makes people fat. The thinking is that someone with a type 2 pancreas overproduces insulin every time glucose hits the system. That causes a blood sugar drop and then the person either eats to correct it or the liver produces glucose. Either way it creates a vicious cycle and the person gains weight and becomes more insulin resistant until the pancreas can't keep up and type 2 diabetes is diagnosed.
Those of us with type 1 diabetes are the most critical of people with type 2, which is silly. Type 2 diabetics rarely get the diabetes education and great doctors that those of us with type 1 usually have access to. They are blamed for their disease. I know it's frustrating to deal with the general public and their lack of understanding about diabetes, but looking down or being harsh to someone with type 2 diabetes isn't going to fix the problem. If we want the general public to be knowledgable about the difference between type 1 and type 2, we should take the time to be knowledgable about both too.
Sorry! I didn't know anyone replied. Jenna, our petition is just to have a revision made to the names of both T1 and T2 to a name that more accurate reflects the nature of the disease. We believe that the medical community is most suited to make this decision, but at the end of our petition we give examples- just examples- of what we mean by reflecting the true nature of each condition. For T2, we say something like Insulin Resistance Diabetes (IRD). This reflects the nature whether the resistance is a result of excess weight and lack of exercise, genetics, Poly-ovarian Cyst Syndrome, etc. And for T1- please bear with me on this one as it was really tough- Autoimmune Beta Cell Apoptosis (BCA) Diabetes. We found this exact term actually used in several recent medical papers, presentations and studies. The term was actually used as the "name" for T1. , We figure it will be shorted to the acronym like LADA or MODY or people will say Beta Cell Apoptosis or Autoimmune D. We actually had just Autoimmune D until the last minute. Then we found new research suggesting that the immune system may be involved in the development of the insulin resistance in T2. The findings are that the excess fat may cause an immune response against the cells surrounded by the fat and that immune response causes the resistance that in turn results in T2. So, autoimmune on its own wasn't unique enough. The point is to name them in a way that indicates the unique nature of each disease.
And Jenna, one of our goals of this petition was to be sensitive to the needs of T2 as well as T1. That is something that has been missing in all previous attempts. I have to believe that is one of the factors that has allowed someone like Dr. Ricordi to sign it. Dr. Stephen Ponder has also signed and shared on his FB page. We are at 1,300 signatures is less than a week. I'm excited!
Thank you so much for signing and sharing, Scott! It goes beyond all of the frustrations of T1's- which my son and I understand completely. But its a matter of safety and proper medical care for T1's. Its downright dangerous when these misconceptions extend to the medical community and caregivers for our kids like coaches and teachers. Treating a T1 like they have T2 is putting the T1 at risk. Its also a matter of fundraising- a better understanding of the disease will benefit fundraising towards advances and a cure.
For T2's- a proper name can give them a chance to bring clarity to their awareness campaign and dispel myths that abound about there disease as well. There is truth to what is said, but there is so much more and the public doesn't get it either.
We really hope we can make change happen that will benefit the entire diabetes community!
Thanks for clarifying what the names would be. I looked over the petition and hadn't seen it.
My "be nice to type 2's comments" were just in reply to other post. Frankly, I don't have strong feelings about changing the disease names, but your response about it benefitting people with both type 1 and type 2 is compelling.
Please don't change the name. It makes a lot more sense with one name for one disease, and variations for the slight differences between the two. Please learn the basic definition of "Diabetes" and you will understand the correct name is already being used. Never expect the layperson to have comprehensive knowledge of something that plays a tiny or zero role in their day-to-day life. One simple name, "Diabetes", with two or more ( and more may be discovered or named), is about as simple as you can get. Heart Disease and Cancer have many varieties, but when you are sick or dead the cause is just Cancer or just Heart Disease.
Let's keep the details where they belong. If the medical and educational facilities need more education, focus on that. Adding a new name? Please give me a good reason that is more benefit than the potential harm. Semantics are for lawyers. I encourage you to spend more time understanding your children's disease and the full extent of the complicated metabolic and digestive processes, and ensuing potential harm to the circulatory and nervous systems and organs.
Hi James. Just saw your reply. I understand the definition of Diabetes very well and agree that, of course, T1&T2 are and always will be forms of D (along with other forms that actually have names). We are not petitioning to change that fact. We just want type classification names that mean something- that do some education in and of themselves- something the numbers 1&2 do not do. They will still be sister forms of D, but with names that will facilitate the education process- names upon which educational campaigns can be effective. Your example of Cancer is a perfect one- yes, all forms are still cancer, but I can't imagine how difficult it would be for each type to educate, let alone advocate for a cure if they were called Cancer Type 1, Cancer Type 2,.....Type 36, etc.
I appreciate your suggestion to learn more about my sons disease and its management. That is exactly what I have spent this past year doing 24/7. My entire life changed on a dime when he was diagnosed. I dropped every aspect other than taking care of my children and learning as much as I possibly could about this disease and its management. May I suggest that you actually read the petition we have created before you pass judgement on its merits or on my understanding of my son's disease. You ask me to give you a good reason to do this- please read the petition. You will see all of our good reasons. Then if you do not agree, I totally respect your opinion. Right now we have almost 3,800 signatures and the support of several esteemed individuals within the D world. I continue to be encouraged and i will continue to advocate for our children, while effectively understanding and managing my sons D every single day.