The following has been shared by Anna Nicolaou: Within the medical world, there’s positive progress being made on a daily basis for a variety of things such as research and new forms of medicine. However, when it comes to correct diagnosis and transition from a pediatric health care team to an adult health care team, the … Read more
Ben Raskin-Gross and Julie Raskin participated in Rare Across America initiative sponsored by the EveryLife Foundation. This initiative empowers advocates to meet with the staff of members of Congress at their local district offices. Ben and Julie shared their personal stories and advocated for issues of great importance for the congenital hyperinsulinism and broader rare … Read more
Hello, my name is Julie, and I am currently a senior at the University of Pittsburgh! Admittedly, receiving the initial diagnosis of Congenital Hyperinsulinism (HI) impacted my parents more than me; however, the notion of being a “mystery child” has always been something I’ve wrestled with. Growing up, I knew that I was “different”. Other … Read more
From Birth to Diagnosis: Camilla’s Tough Start We are an international family living in Denmark. I’m a Chinese mother, and my husband is Danish. Our first daughter, Camilla, was born in January 2021. During my pregnancy, there were some unusual signs. Camilla’s heartbeat was slightly higher than normal at 35 weeks, and I was suspected … 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