Brittle Diabetes - No Longer A Neglected Rare Disease



Through the efforts of Brittle Diabetes Foundation, Brittle Type1 Diabetes is now listed as a rare disease affecting less than 9,000 US citizens and is considered a separate form of T1D by the NIH.


( September 16, 2013 -- The National Institute of Health (NIH) Office of Rare Diseases recently listed Brittle Type1 diabetes (BD), for the very first time, as a RARE DISEASE and a distinct and separate form of type1 diabetes. The NIH website for Brittle Diabetes contains a variety of support services. 

This all occurred as the result of efforts by Brittle Diabetes Foundation (BDF) which was formed in 2012 and is presently the only organization listed by the NIH as supporting brittle diabetes. 

The founders of BDF were initially surprised to find that none of the major health organizations recognized the existence of this rare condition. They included the NIH, Juvenile Diabetes Research Foundation, National Organization of Rare Diseases, and the International Diabetes Foundation . Despite 80 years of clinical trials and documented medical research, Brittle Diabetes and those afflicted by this rare disease were literally neglected. Estimates range from 3,700 to 8,700 US citizens presently afflicted with this ailment. 

Brittle Diabetes is marked by the rapid unstable, unpredictable, uncontrollable, rise and fall in blood glucose levels leading to a disrupted daily life style. However, there are some 18 known causes of brittleness which when diagnosed and treated often result in a brittle diabetic reverting to a stable type1 condition. Brittle diabetics are generally diagnosed after prolonged hospital stays when physicians, under controlled environmental conditions, come to realize that they can't stabilize their patient's blood glucose levels using the stable type1 therapy playbook. It does not work.

Brittle Diabetes Foundation does not seek a cure for type1 diabetes but rather looks to educate health care practitioners on how to distinguish a brittle diabetic. They can do so by listening to what their patient's are saying and quantifying levels of instability when they first suspect a patient to be non-compliant when stable type1 diabetes results are not achieved. Once recognized as compliant, we look to physicians to customize their treatment in search for the cause of brittleness. Once known, they can treat appropriately.

There is a set of personal near tragic stories as to why BDF was originally formed and they can be found on BDF's website. BDF will continue to carry this message on behalf of brittle type1 diabetics to those organizations yet to recognize what NIH has come to realize - brittle diabetics are no longer to be neglected.

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