Press Release - Nov. 10, 2017
BDF Seeks Treatment Guidelines for BT1D Patients Title
Venice, Florida. Nov. 10, 2017. Brittle Diabetes Foundation (BDF), begun in 2012, does not seek a cure for diabetes. We leave that to the hundreds of foundations and Non-Profit Organizations (NPOs) who raise millions of dollars each year in search of a cure. What BDF does seek is a treatment handbook for physicians, especially Endocrinologists, to follow, when Brittle Diabetes (BD) is suspected or diagnosed.
The American Diabetes Association (ADA) and the Division of Diabetes within the NIDDK/NIH would have Americans believe that Brittle Diabetes, also referred to as labile diabetes, is just a term sometimes used to describe hard-to-control type 1 diabetes (T1D). They refuse to recognize Brittle Type 1 Diabetes (BT1D) as a separate and distinct disease despite suggesting that people with T1D are at greatest risk of developing the condition. The NIH also lists Brittle Diabetes as a rare disease on its Genetic and Rare Disease (GARD) website.
Each year the ADA publishes a guidebook referred to as the Standards of Medical Care in Diabetes. In their latest issue 2017, they make no mention of: Brittle Diabetes, unstable, uncontrollable or unpredictable characteristics that describe BT1D, the latest diagnostic criteria to differentiate stable T1D from BT1D, that the rate of depression in BT1D is no different than those with stable T1D raising doubts about it being a psychosocial ailment rather than physiological and instead treat all patients with T1D as if they were the same with some harder-to-control.
The number one question posed by patients and their families to BDF is “where do we find a physician who truly understands the nature of this disease and who knows how to treat it properly? Most individuals with BT1D refrain from going to hospitals because the type 1 treatment guidelines established by the ADA do not work when applied to those suffering with BT1D.
The problem encountered when dealing with the ADA, is the assumption made by the ADA and its’ Professional Practice Committee, that in its’ process of reviewing last year’s medical findings for incorporation into their guidelines, that decades of information that serves as its base, is correct.
Evidence now suggests that this assumption is false. According to John Ioannidis M.D. from Stanford Medicine and his colleagues, the bulk of monies being spent on medical research is wasted because of poor research design and intrinsic bias leading to data that is useless and incorrect. He has been addressing this issue since 2005 to which ADA has apparently turned a deaf ear.
Add the fact that most major medical experiments are only run once without replication, a key requirement of the scientific method for the performance of research, compounds the problem. Growing evidence exists that attempts at replicating medical research that presently serves as the foundation for various ailments are proving to be unreproducible. As such, the likelihood that the ADA’s process of building data onto a questionable foundation of false information might well explain why their guidelines fail to function when applied to BT1D.
It is simpler for the ADA to take an ostrich approach to the issue of Brittle Diabetes impacting some 4,500 individuals in the U.S., than spend time, energy, resources and money to help so few.
For those unfamiliar with Brittle Diabetes, it is characterized by rapid shifting in blood glucose levels from high (hyperglycemia) to low (hypoglycemia) or reverse, in a short period, leading to symptoms that disrupt quality of life, causing frequent hospitalizations and at times death.
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Emanuel V. Sorge Ph.D.
Brittle Diabetes Foundation