Nothing beats connecting with someone in-person who is going through a similar experience to you. Despite having friends and family around me when I was diagnosed with Cushing’s disease in 2022, I felt so lonely and scared. Pituitary diseases are so complex that they are difficult to live with, difficult to diagnose, difficult to understand and often really difficult to explain too.
A pituitary patient will find themselves having to be an expert in their own disease to get the treatment and understanding they deserve. This can be exhausting. In 2023 I ran the London Landmarks Half Marathon to raise money for The Pituitary Foundation, to try to pay back the help that I had received from the charity, which was a great source of information for me once I was diagnosed.
Before the race, organisers from the charity met us outside Buckingham Palace, giving me my first opportunity to meet other patients. It gave me such a lift being among people who understood everything I was going through. So when I realised the charity were looking to set up more support groups around the country, I knew I needed to help make this happen.
In 2023 I started the Nottingham Support Group and have met the most wonderful people and formed some lasting friendships. I am now so excited to be starting the Leicester Support Group in July. Sharing information, supporting each other, making connections and just being in the same room as people who ‘get it’ is a wonderful experience. The groups are a great source of information and we get expert speakers in from time to time to answer questions too.
I love being an ambassador for The Pituitary Foundation also, and am often doing crazy challenges to raise money and awareness for them, such as completing a marathon last month. This is my second time having Cushing’s disease and whilst the disease doesn’t get any easier, coping with it does now that I have such a fantastic support network. Alone we are rare, together we are strong.