Sharing knowledge and experiences of insulinomas
A definitive source of information about insulinomas. The aim of this site is to create an insulinoma community, raise awareness and to provide up to date, easily accessible information. To date, most of the information on insulinomas is grouped with other rare neuroendocrine tumours. This site will provide a unique platform by bringing together information on this rare condition in one place.
We recognise that many visitors to this site will be outside the UK. Everyone, wherever you are from, is welcome to share your personal experience of an insulinoma. Join a worldwide community of people who have been diagnosed with an insulinoma and find out more from their experience by joining our Facebook Group.
Insulinoma Charity UK (ICUK) is fully committed to ensuring that patients, as well as their families and caregivers, receive the necessary support and information they need to manage this rare condition effectively. The establishment of Insulinoma Charity UK marks a significant milestone in the charity’s journey to promote awareness and understanding of insulinomas. Find out more about Insulinoma Charity UK Registered Charity Number 1204926.
The more we share the more we learn about Insulinomas
What are insulinomas?
Insulinomas are a rare type of functional neuroendocrine tumour usually found in the pancreas. They are called functional because they produce insulin and cause blood sugar levels to drop, quite often dramatically and in 'episodes.'
Even the smallest tumours can cause symptoms connected to hypoglycemia (the medical term for low blood glucose levels). The vast majority are benign (with no spread beyond the pancreas). However, 10% are malignant and by the time of diagnosis will have spread elsewhere in the body, usually the liver. The tumours are generally diagnosed in middle age and slightly more women are affected. If an insulinoma is suspected you may also be screened for a genetic condition called MEN1.
Read insulinoma stories from real people in our free book
This book provides a greater understanding of insulinomas and contains information about symptoms, diagnosis and treatment.
The book is written by real people with an insulinoma who wanted to share their story about having the condition. It is written in their own words and in their own voice.
It is dedicated to the memory of Te Rina Lyttle who died at the age of 15 years old from a malignant insulinoma in April 2012.