Co-Existing Conditions
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HI & Co Existing Conditions
Hyperinsulinism can co-exist with a range of medical, neurological and developmental needs. Here you’ll find organisations recommended by HI families and our team.
Neurological & Neurodevelopmental Support
The UK Infantile Spasms Trust provides a network of support to families with children affected by the rare seizure disorder infantile spasms, also known as West syndrome. The charity offers a lifeline to anxious parents via its online community, and works alongside medical professionals to raise awareness of this little-known condition, which can be very difficult to recognise – but potentially very damaging if left untreated.
We offer a grant scheme to our group members to assist with equipment or therapy to help with recovery, and we are actively involved in research into the condition.
Some children with HI experience developmental, neurological, emotional or sensory challenges. Our Developmental, Neurological, Psychological and Sensory website pages offer clear information and practical strategies to help families understand and manage these needs. Explore them here:
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medical
UK CWD AG is a parent‑led Facebook community supporting families of children and young people living with diabetes. They welcome HI families whose children now have diabetes, offering a supportive space to share experiences and ask questions. Join their main group here:
Kabuki UK
HIVE member – coming soon
hyperinsulinism
Congenital Hyperinsulinism (HI) is a rare but serious condition where the pancreas makes too much insulin, causing low blood sugar. It is the most common cause of persistent hypoglycaemia in newborn babies and children. Understanding how HI works and why early diagnosis and treatment matter helps families, carers, and professionals support children living with the condition. Find out more about CHI and how it affects blood sugar regulation.
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💡 CHC Project: The Children’s Hyperinsulinism Charity is working with the Exeter Genetics Team to create clear, family‑friendly resources to help explain genetics in CHI, coming soon. In the meantime, this link explains the genetics of HI and includes video recordings from the Exeter Genetics team taken from our family conference for anyone who would like to learn more.
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Know an organisation that helped your family?
“Every organisation in the HIVE has been checked by our team or recommended by HI families.”
