Julie Raskin The National Organization of Rare Diseases (NORD) has created a collection of video clips about rare diseases. Last month they visited our family and filmed us as part of this collection. I am so pleased that Congenital Hyperinsulinism International is represented in this video collection and that NORD is promoting the importance of family support … Read more
An HI diagnosis is often a crisis for the family of a newly diagnosed child. The family must adapt to the responsibilities of caring for a child with very specific needs. To help new families cope with it all, CHI is embarking on a new program linking families of the newly diagnosed with experienced HI … Read more
For years congenital hyperinsulinism researchers have been studying the properties of green tea to potentially cure hypoglycemia due to hyperinsulinism/hyperammonemia syndrome. People suffering from this type of hyperinsulinism must load up on carbs before ingesting protein because of increased responsiveness to leucine. Many of these patients also take a medication, diazoxide, to control blood sugar … Read more
COACH, the Collaborative Alliance on Congenital Hyperinsulinism, has created a website that is now in English in addition to German. Last month I wrote about Dr. Winfried Barthlen, The Surgeon from Griefswald, Germany who has conducted research on and treated patients with atypical segmental mosaic congenital hyperinsulinism. You can now read all about his approach … Read more
Earlier this year I had the opportunity to attend the Genetic Diseases of Children Conference in New York City sponsored by the New York State Department of Health. What was new and different about this meeting was the mix of people attending: researchers, academics, PATIENT ADVOCATES, government officials, and drug company representatives were all invited … Read more