“Did you know that in the old days, they used to remove 98% of the pancreas?!”
This quote comes from Dr. Adzick’s imagined future, a world where babies born with Hyperinsulinism (HI) have access to more advanced medications. A world where they no longer endure invasive surgeries or harsh side effects from current therapies.
He shared this vision on stage during the Congenital Hyperinsulinism International (CHI) Family Conference in Philadelphia earlier this month. As a mother to a child born with Congenital Hyperinsulinism, who is now a 7 year old transitioning to diabetes, I am so grateful that I was able to attend the 2025 conference. This is our third conference and I learn more each time we attend. It’s an amazing mix of education and community; being among others affected by HI is incredibly valuable.
One thing stood out to me this year: in between expert talks from medical professionals, CHI staff took the stage to share our perspective through data they’ve gathered from the HI Global Registry (HIGR). I loved this. The technical talks are fascinating and helpful, but the importance of the patient voice cannot be understated. It is what we experience in our day to day lives. Whether you have HI or care for someone who does, our voice must shape the future of research. HIGR is how we get there.
At this year’s conference, I felt the power of our data. Pharmaceutical companies sat beside us, really listening to what life with HI is like and what we need. We saw a presentation on reported neurodevelopmental challenges in HI patients (as CHI’s Registry Director Lauren Lopez said, “There is still so much more to learn.”). A doctor discussed the limitations of continuous glucose monitors (CGMs), followed by CHI’s presentation on the caregiver and patient perspective. It gave me chills when Lauren shared that CGMs significantly impact daily HI management. 60% of respondents said CGMs allowed someone else to safely watch the person with HI, making school, sleepovers, and babysitters possible.
I know it can feel overwhelming to add one more thing to your to-do list. But here are 5 reasons to update your HIGR surveys today:
- Diazoxide is still the only FDA-approved drug for HI in the U.S. And it doesn’t work for up to 60% of patients.
- Surgery doesn’t cure diffuse disease. Over half of people who had a pancreatectomy for diffuse disease still experience frequent hypoglycemia.
- HIGR data show over half of people with HI experience neurodevelopmental challenges, and much more research is still needed.
- Another world is possible. And the medical community is listening.
- There is a lot of scientific information out there; CHI is here to help demystify it for us.
Join HIGR and update your surveys. Connect your CGM or glucose monitor. It’s one of the most impactful things you can do today to support our HI community.
The HI Global Registry (HIGR) is the only patient-powered registry for people with hyperinsulinism (HI). Learn more at higlobalregistry.org and sign up today.
