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
Read this post in Italian. My name is Martina Sena, and I’m a mother to a beautiful three-year-old girl named Gioia. I’m also an intensive care nurse. You would think my professional background would have prepared me for anything, but nothing could have prepared me for the journey we began when Gioia was just five … Read more
Ricky is an energetic, larger than life 8-year-old who loves Boy Scouts, Minecraft, gaming, building, music, and most importantly, being a big brother to his brother Michael. He is the most empathetic person you will ever meet, constantly trying to help and put a smile on your face, especially when he realizes you could use … Read more
Whitney, one of our HIGR Ambassadors, shares with us the following story. “If you had asked me 10 years ago what a rare disease was, I wouldn’t have had an answer for you. My youngest, Bohannon, was diagnosed in 2014 at 3 weeks of age with the diffuse form of congenital hyperinsulinism. She inherited 2 … 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