The Daily Life of a
Person Impacted by
Brittle Type 1 Diabetes
TWO prevailing views about BT1D updated 11/2019
The Brittle Diabetes Foundation (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”.
Supporting its' position are some 750 research articles written on the subject in recognized medical journals, the establishment of diagnostic tests to distinguish BT1D from stable T1D and the recent headlines for the development of a treatment therapy to aid BT1D individuals. The Alternative Position has been advanced by the National Institutes of Health (NIH) in conjunction with the American Diabetes Association (ADA) viz., “Brittle diabetes is a term that is sometimes used to describe hard-to-control type 1 diabetes”.
When asked to support their position with any form of medical evidence - the silence was deafening. All they kept saying was "based on the latest scientific evidence" and yet could not cite one reference to support their position.
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 distinguishes Brittle from Stable T1D ?
1. BT1D defies all modes of standard treatment applied to stable T1D patients.
2. Blood glucose levels are unstable, uncontrollable and unpredictable not “harder to control”.
3. HbA1c readings are useless when applied to BT1D patients according to the American
4. Diagnostic Criteria To Differentiate BT1D from Stable T1D has been established.
5. Glycemic variability (GV) is significantly higher than that of a stable T1D. An international consortium of scientists has adopted 36% GV to distinguish stable from unstable diabetes.
6. Hypoglycemia and hypoglycemic unawareness are unique characteristics that distinguish BT1D from stable T1D. Three forms of BT1D have been described: recurrent diabetic ketoacidosis, predominant hypoglycemic forms and mixed instability
7. Brittleness, a rapid rise or fall in BG levels in a short period, always has a secondary cause. By diagnosing and treating the cause (17 recognized), allows one to live his or her life as a stable T1D. There is no cure for T1D but there is for brittleness.
8. Numerous trips to the ER and prolonged hospital stays common.
9. No glucose pattern established for creating a basal/bolus insulin regimen. Major reason why type 1 treatment now employed fails those with BT1D.
10.For over 30 years BT1D was considered a psycho-social disease until researchers in 2016 compared BT1D to stable T1D patients and found no differences in psychopathological Axis 1 issues including depression and anxiety formerly classified as the cause of the brittle condition.
11. Symptoms serve to disrupt daily life activities including the inability to hold a full-time job.
SSI and SSD are now easier to obtain as a result of BT1D recognition as real, not a myth.
12. FDA approves orphan status for potential BT1D therapy viz., islet cell transplantation.
13. You can distinguish a brittle patient by the frustration level of their healthcare team.
BT1D Impacts an estimated 70,000 US residents or 1 out of every 20 T1D's. The total T1D population in the US is between 1.25 and 1.5 million individuals.
Note: the long held belief that BT1D was limited to 0.3% or 3/1000 T1D's (total 4,500 BT1D's) would not account for 70,000 diagnosed individuals recognized as existing according to Dr. Ricordi, DRI's director of islet cell transplantation.
IN THE NEWS - LATEST RESEARCH 2020 Diabeloop, a French start up, recognizes that there is a subset of patients with Type 1 Diabetes that experience frequent, extreme, and unpredictable swings in blood sugar levels. They developed an algorithm for automated insulin delivery that is currently being tested in a clinical trial on 7 patients in France (ClinicalTrials.gov Identifier: NCT04042207). The aim of this feasibility study is to test the safety and efficacy of the system. More information on the trial can be found here. More information on Diabeloop can be found here.
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Updates will include clinical trials, new causes, latest technology, new apps, finding a cure and our ongoing efforts to seek recognition for BT1D as a real disease and refocusing efforts on how best to treat this ailment
Newsletters are published quarterly in January, April ,July and October
1) OCTOBER 2016 (2) JANUARY 2017(3) APRIL 2017(4) JULY 2017 5) October 2017
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11) April 2019 12) July 2019(13) October 2019 (14) January 2020
FDA approves orphan status for DRI's Potential BT1D therapy
Diabetes Research Institute (DRI)
Viacyte's Encapsulation Therapy
In 2017 the NIH removed BDF as a resource along with other NPO's from its GARD website, when it sided with the ADA relegating BT1D to just a term used to describe harder to control T1D. In our place they substituted the ADA that doesn't believe in BT1D.