For JDRF to adopt NIH's decision that Brittle Diabetes is a rare disease
This petition made change with 249 supporters!
I’m the father of a brittle diabetic daughter who formed Brittle Diabetes Foundation www.bdtype1.com because not a single health care organization recognized Brittle Diabetes as a rare disease nor did they see it as a separate and distinct form of type 1.diabetes. After a twenty three day hospital stay, ten days in a coma, physicians realized that they could not stabilize her blood sugar levels and said “ Oh my God, she’s brittle”.
Even the leading funder of research in type 1 diabetes, JDRF suggests that Brittle Diabetes is not a distinct form of type 1 and its treatment requires nothing more than diligent monitoring by the patient. After extensive research by BDF, we found evidence to the contrary and asked the NIH (National Institute of Health ) to evaluate this disease. After four months, the NIH concluded that Brittle Diabetes is a rare disease in its own right and is a separate and distinct form of type 1. They also concluded that brittleness, the rapid, unstable, uncontrollable and unpredictable rise and fall in blood glucose levels, has a secondary cause that requires physicians to become detectives. At present, BDF lists 18 known causes of brittleness.
Unlike type 1 diabetes, brittleness leads to a highly disruptive daily life for those who suffer from this rare disease.
We ask you to sign this petition requesting that JDRF re-evaluate their position in light of NIH’s findings. If they agree with the NIH and BDF, we ask that they reflect their new thinking on this rare disease on the JDRF website.
Give Brittle Diabetics the opportunity not to be overlooked.
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Manny Sorge needs your help with “"Derek Rapp CEO JDRF": For JDRF to adopt NIH's decision that Brittle Diabetes is a rare disease”. Join Manny and 248 supporters today.