There is a remarkable amount of activity right now focused on understanding what it’s really like to live with congenital hyperinsulinism (HI). Through the HI Global Registry (HIGR) — the patient-powered research project CHI launched in 2018 — we’ve been able to capture the lived experience of HI in a detailed, scientific, and meaningful way. … Read more
(The following is shared by HI parent Felicia Huffman:) When my daughter, Jilani Rose, was diagnosed with congenital hyperinsulinism (HI) as a baby, our world changed overnight. She underwent a 98% pancreatectomy — a lifesaving procedure that came with a lifelong consequence: the development of insulin-dependent diabetes. We’ve come to view this transition through both … Read more
Natural History Repeats Itself: My journey promoting and participating in natural history studies When I first heard the words “natural history study,” the only thing that came to mind was the Museum of Natural History – and I had no idea if the two “natural histories” were related in any way. Now, I understand why … Read more