Tee Clarke

Tee Clarke, 32, from the Central Coast of New South Wales, has been living with severe hypoglycaemia caused by NIPHS (Non-Insulinoma Pancreatogenous Hypoglycaemia Syndrome), also known as nesidioblastosis. Her blood sugar levels could fall as low as 1.9 mmol, sometimes up to 18 times a day, including during sleep. Medications brought significant side effects and still failed to control the condition. After exhausting medical options, Tee made the life-changing decision to undergo a near-total pancreatectomy in February under the care of her specialist team at St Vincent’s Hospital in Darlinghurst, Sydney. Just four weeks later, her recovery has been remarkable. Her blood sugars are now stable, she has been able to stop powerful medications, and she says she feels better than she has in years. In this honest and hopeful account, Tee shares what led to her decision, what the surgery and recovery were really like, and why, despite the risks, it has given her a new sense of freedom.

Alex Spencer-Brown

After a long and difficult journey to diagnosis, Alex was eventually diagnosed with an insulinoma following severe hypoglycaemia and years of being misunderstood. Her experience of misdiagnosis and life saving surgery drives her passion for raising awareness and supporting others affected by this rare condition.

Enola Wright17 January 2026

Danielle Walker

Danielle Walker is a 37 year old mother of three whose life changed suddenly after unexplained hypoglycaemic episodes led to a diagnosis of a metastatic insulinoma and the progression to an aggressive small cell metastatic neuroendocrine cancer.

Enola Wright8 January 2026

Debbie's Story

My story of my Insulinoma began when I was 44 – 2019. I didn’t know I had Insulinoma at the time and thought all my symptoms were due to perimenopause, as I was diagnosed as such.

Enola Wright30 January 2024

Paul’s Story

“Those words were both terrifying and strangely reassuring…”
It’s confirmed as an insulinoma

Enola Wright26 July 2020Insulinoma

Marjorie's Story

Marjorie Brown from Vancouver, Canada, talks about her insulinoma which was surgically removed in February 2012.

Elliot wright15 November 2016

Paula's Story

"I was reading my e-mails and ended up “getting lost in my computer”. It was like being in the middle of a computer game, but only for real."

Elliot wright1 September 2016

Fleur's Story

"The first “funny turn” happened when I was at home and my brother was downstairs. I became confused and couldn’t understand the noises he made and what he was doing."

Elliot wright15 October 2012

Laura's Story

Laura, from Worcestershire, UK, was diagnosed with two insulinomas in January & March 2010, and one further insulinoma July 2011.

Elliot wright24 June 2010

Graham's Story

"One evening when visiting a hospital, as I entered casualty I felt ‘weird’ and collapsed into an empty wheelchair, promptly to be ejected from the chair bodily by a passing porter."

Elliot wright18 August 2009