As we launch our Peterborough support group, we hear from the new group leader Lisa about her pituitary journey so far.
Lisa’s story
In 1977 when I was nearly 4 years old, I was diagnosed with histiocytosis x now known at Langerhans cell histiocytosis (LCH). I was a patient at Great Ormond Street Hospital. At about the same I was also diagnosed with central diabetes insipidus now called AVP deficiency. I know what its like to grow up with rare diseases. I especially know what its like to grow up with a rare pituitary condition that few people have even heard of let alone understand. However, for me it is my normal and I don’t know any different.
Over the years I encountered other issues such as not growing for a few years between ages 4-7, late puberty and being told I couldn’t have children. However, I have been married to my husband Steve for 28 years and we have been blessed with 2 sons who have grown up to be amazing young men.
Having had a pituitary condition for almost all my life it has at times been lonely as I have rarely met anyone in person with a pituitary condition. However last year, I attended the Get together day in Leicester organised by The Pituitary Foundation. It was a really good day. I especially enjoyed spending time with others with pituitary conditions – even after all these years this was the first time I had spent time with others with pituitary conditions. It made the day even more enjoyable.
Inspired by the Leicester Get together, I was very pleased to be asked by The Pituitary Foundation if I was interested in setting up a local support group. I want to set up the pituitary support group to help and support others in my area who are managing pituitary conditions. I want the group to be there for everyone whether they are newly diagnosed or old timers like me and everyone in-between. I want to provide a safe and supportive space for everyone involved not just patients but their carers and family as well. We all know this journey is often a lonely and isolating one and I really want no one navigating a pituitary condition to ever feel alone in this again. Please join us!
The Peterborough support group will be meeting for the first time in on 10 October 2026, at The Alpha Centre in Adderley. If you would like more information or to attend the meeting, please click on the button below.
