BDF is Controversial - Why? - Because we dare to differ!
BDF believes that Brittle Type 1 Diabetes (BT1D), is a distinct rare disease, characterized by a severe instability of blood glucose (BG) levels with frequent and unpredictable episodes of hypoglycemia and/or ketoacidosis that disrupts quality of life, often requiring frequent or prolonged hospitalizations”.
So did the National Institutes of Health (NIH)/ Genetic & Rare Disease division (GARD), from July 3,2013 through March 12,2017.
However, as of 3/13/17 the NIH/GARD opening line now reads: “Brittle diabetes is a term that is sometimes used to describe hard-to-control diabetes” a description advanced by the American Diabetes Association (ADA).
For four years 2013 to 2017, after vetting, the NIH listed BDF as the only organization in the USA supporting this disease. According to GARD specialists, "BDF has developed an online resource which clearly delineates the differences between Brittle diabetes and stable type 1 diabetes".
On March 13, 2017, at the request of unknown experts, the NIH removed BDF from their BD website. In its' place, they substituted the American Diabetes Association and NIH's/NIDDK both of which do not recognize the existence of this disease.
See latest correspondence (March 27,2018) from NIH/NIDDK stating their position that BT!D is not a distinct disease.
Brittle Diabetes - How do we know it’s REAL.?
Because Physicians tell us so when they diagnose us or our loved one with Brittle Type 1 Diabetes (BT1D).
How do we know it’s different than stable T1D?
Because scientific researchers tell us so in some 1,200 medical papers and articles on BT1D.
How do we know its rare?
Because the NIH’s Genetic And Rare Disease Division says so.
Why was BDF founded?
BDF was founded to raise awareness of this rare disease, highlight differences between BT1D and stable T1D and to gain recognition for Brittle Diabetes as a separate and distinct disease.
What prevents BT1D recognition?
Bottom line concerns! Medical coding is complex and by recognizing BT1D as a separate disease complicates how hospitals and physicians get paid. As a result, it is easier to ignore the existence of this rare disease and those whose lives are disrupted daily.
What are the MAJOR DIFFERENCES between Brittle and Stable T1D .
1. Blood glucose levels are unstable, uncontrollable and unpredictable not “harder to control”. 2. Numerous trips to the ER and prolonged hospital stays common.
3. Defies all modes of standard treatment applied to stable T1D patients.
4. No glucose pattern established for creating a basal/bolus insulin regimen.
5. Glycemic variability significantly higher than that of a stable T1D.
6. Brittleness, a rapid rise or fall in BG levels in a short period, always has a secondary cause. By diagnosing and treating the cause (18 now recognized), allows one to live his or her life as a stable T1D. There is no cure for T1D but there is for brittleness.
7. Symptoms serve to disrupt daily life activities including the inability to hold a full-time job.
8. A1C readings are useless when applied to BT1D patients according to the American
Association of Clinical Chemistry. That is why BDF recommends Glycomark testing.
9. New Diagnostic Criteria To Differentiate BT1D from Stable T1D has been established.
10. You can distinguish a brittle patient by the frustration level of their healthcare team.
11. BT1D Impacts an estimated 4,500 US residents compared to 1.5 million with T1D.
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KNOWN CAUSES OF
BRITTLE Type 1 DIABETES
ADA turned down BDF's formal proposal to recognize BT1D as a disease. ADA did so by omitting any mention of the disease in its 2017 & 2018 Standards of Medical Care for Diabetes. It makes no mention of the disease, nor diagnostic tests available to differentiate between brittle and stable T1D or proper modes of treatment which requires searching for the cause of brittleness. Instead, ADA, and now NIH, treat all type one's the same, except that some patients may be "harder to control" than others and require more diligent care.
Our Press Release Campaign spoke to the issue throughout 2017.