I’m Julie, 54 and live in the Midlands. I was diagnosed with Multiple Endocrine Neoplasia Type 1 (MEN1 for short) which is a rare inherited genetic disorder which amongst other things, increases the risk of developing tumours – in essence it is a tumour suppressant gene that doesn’t work properly.
I was diagnosed with MEN1 in 2002 and ever since then have been on an annual screening programme and following a Gallium-68 Dotatate PET scan I was diagnosed with a functioning neuroendocrine tumour (gastrinoma) in my pancreas – pNET, and have since been diagnosed with further gastrinomas in my pancreas and small bowel. I thought as the years went by I was ‘getting away with it’ as each year my scans came back normal – until they didn’t.
Being faced with this diagnosis was daunting – I had never heard of Neuroendocrine Cancer, but the day I found out my diagnosis was the day I knew I needed to find out as much as I possibly could about it. I was pointed in the direction of Neuroendocrine Cancer UK and immediately made contact and ever since then, I have received the most amazing support, providing me with information and guidance which has been invaluable to me.
I knew that I wanted to give something back and applied to become an Ambassador, to help raise awareness, share my story, provide support to others and assist the charity in any way I could. There is so much work to be done to educate people from medical professionals to those we come into contact with on a day to day basis and all those in between.
I am proud to have been accepted into the NCUK Ambassador family and look forward to contributing in any way I can.