Today is a special day in the annals of congenital hyperinsulinism (HI) families. It is the 20th anniversary of the very first message sent to members of the Hyperins Yahoo Group. This group provided a method of efficient communication via email for families living with HI. On June 4, 1999, Jim Nestor, the moderator of the group sent out a message to the 3 members of the group:
“Hello and welcome. This is the first official posting to the group. I am very excited about the possibilities for this discussion group. We had gone about a year before we knew of and were able to talk to another family with
HI. It was such a big help to speak to others going through the same situation. I hope that this service will help others.”
And help it did. Over the course of many years, there were thousands of messages sent and shared and countless discussions about preventing hypoglycemia, HI diagnosis and treatment, feeding, development (sharing precious milestones and fears of delay), disability, parenting, siblings, daycare, school, marriage, divorce, hair, weight, the transition to diabetes for some, and many more topics.
A few days ago, I asked Jim why he started the group. He said: “I remember Dr. Stanley asking if we would like to talk to another HI family or two. I felt like we were completely alone in this until that point. You both were so helpful to us. Just to speak to another family who could relate to what our daily routine was, and share information was such a help.”
Jim was referring to the 3 original family members. To begin with, there were 3 members of the group, including Jim. Over time, the group grew to include hundreds.
Another early member shared:
“The HI group was a lifeline, and Jim was a terrific moderator. As the group grew, several of us recognized similarities with other families and were able to help each other out with information about schools and IEPs, dealing with social issues, health care professionals, and experimental treatments.”
The anniversary floods me with memories of sitting in our little home office in 1999 and the early 2000’s, feeling comforted and supported by families from all over the world, as I wrote, read, and responded to messages. One night our son’s G-tube came out, and we were going to go to the emergency room to have a new one placed. The day before, the same thing happened to another child with HI somewhere else in the world, as reported by a mother in the Hyperins group. That mother described how she replaced the g-tube herself, and that it was a rather easy process. With that message fresh in my mind, my husband and I decided we could give it a try, and we were successful, saving our son from the trauma of an emergency room visit.
There were many small and large triumphs as a result of Hyperins, as well as simple sharing and listening. From its humble beginnings, Hyperins paved the way for the first Congenital Hyperinsulinism Family Conference organized with CHOP in 2003, the creation of Congenital Hyperinsulinism International in 2005, and HI groups and organizations in several countries around the world–making it possible for the patient community to expand from self-help to improving the lives of people born with HI all over the world. This work has included raising awareness of hyperinsulinism to prevent death and brain damage, supporting research with pilot grants and the HI Global Registry, many conferences and meetings bringing the whole hyperinsulinism community together, new drug development, and many support programs for HI families.
Today, communication between parents of children with HI, other family members, and individuals living with the condition has mostly migrated to social media platforms. The Congenital Hyperinsulinism International Family Forum on Facebook has over 1,300 members from 66 countries and is buzzing with activity, and there are other groups as well, where there is a tremendous amount of communicating going on in many different languages, and in different countries around the world.
On this 20th anniversary of a very special milestone for the HI community, I want to thank Dr. Charles Stanley for encouraging families to communicate with each other and Jim for being the first to bring us together online.