Brittle Diabetes Foundation (BDF) Provides Visibility to A Rare Disease
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Jan 31, 2017, 08:35 E
EAST NORWICH, N.Y., Jan. 31, 2017 /PRNewswire/ -- BDF was established in 2012 by the Sorge family and their friends after nearly losing their 40 year-old daughter Rosemarie to Brittle Type 1 Diabetes (BT1D). Despite the diagnosis by attending physicians, US health agencies, at that time, did not recognize BT1D's existence.
BDF's 2012 research into Brittle Diabetes, found 1,000+ medical research articles on BT1D and that the National Institutes of Health (NIH) had funded research for its cure. BDF requested an NIH review. On July 3, 2013 the NIH included BT1D in its list of rare diseases, set up an informational website, and listed BDF as the only organization supporting BT1D.
BDF's mission is to raise awareness of the differences between stable type 1 diabetes and those diagnosed as being brittle, the primary characteristic of BT1D. Brittleness describes a rapid shifting in blood glucose levels, either up or down in a matter of minutes - the symptoms of which results in a disruption in daily life activities.
Unlike stable T1D, BT1D defies all known therapies. It is unstable, uncontrollable and unpredictable. There is always a secondary cause for brittleness (18 identified to date) which when diagnosed and treated returns the patient to a more stable Type 1 condition.
BDF looks to increase physician awareness of this disease by having them first determine their patient's level of glucose instability. If brittleness is diagnosed, the physician should determine its likely cause rather than labeling their patient non-compliant.
At BDF's request, JDRF, a leader in T1D research, recognized the existence of brittle diabetes in 2016.
On March 4, 2016, BDF submitted a proposal to the American Diabetes Association (ADA) for the classification of BT1D as a rare disease offering two recommendations to help guide physician care: the establishment of regional panels of experts to assist physicians with difficult BT1D cases and the development of an informational platform to close an existing five-year gap in information flow, between basic researchers and practicing physicians. ADA suggested BDF wait for publication of ADA's 2017 Standard of Medical Care (SOMC) in Diabetes.
On January 1, 2017, ADA answered by omitting any mention of BT1D and the term brittleness in SOMC. As a result, BT1D remains invisible to most members of the medical community, governmental agencies and the public.
BDF asks – Given the evidence, why is ADA refusing to consider BT1D as a rare disease?
BDF is a 501C3 non-profit organization whose volunteers help those suffering with BT1D to realize that they are not alone in their struggle for survival. For up to date BT1D information visit www.bdtype1.com. BDF supports some 4,500 people in America and 150,000 worldwide diagnosed with BT1D. BDF hopes to develop a Brittle Diabetes Center for the customized treatment of those diagnosed with this disease.
Manny Sorge Ph.D.
Brittle Diabetes Foundation Inc.