Congenital Hyperinsulinism International

Hyperinsulinism, Patient Stories, The Rare Disease Day 2014 Video

stories from people with congenital hyperinsulinism
Rianna Sommers, Senior at Muhlenberg College and Congenital Hyperinsulinism International Intern, produced a short documentary film, Hyperinsulinism, Patient Stories, with messages from children and their families living in various locales around the world with congenital hyperinsulinism (HI). The film includes excerpts produced by the families themselves describing the experience of living with the condition, in their own words.

In the film, families share their challenges and that they experience joy despite the condition. The importance of connecting to other HI families and being part of a supportive HI community are also themes. The film provides clear evidence for a need for better treatments so that, for instance, children with severe, diffuse HI do not have to be tethered to feeding pumps. One mother shares a positive side of the condition, that she has become an advocate for other patients in great need, through her experience of being part of a larger international community. Another mother and father share how the condition is so intensive to manage that sleep and careers often have to be put on hold. It is a moving film and worth a watch! Here is the video:

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