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.

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.

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.

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.

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

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

"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."

"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."

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

"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."

Radiolabelled Octrotide (RLO), when things started to wrong again...

"I would start to sweat, my lips would tingle, hands started to shake. And then I would feel like I was in a dream."

"I wasn’t feeling too good and I knew I needed to eat something.  I had an empty vagueness around me. Something was wrong."

“Eat a bar of chocolate and take two aspirin”. This was the advice I was given at A&E following a blackout whilst driving.