Pauline’s nominators said:
“Despite having her own pituitary/medical issues she has founded and runs the Cushing’s UK Facebook Group. She goes out of her way to support group members. She does it with so much dedication and passion its unbelievable. She will never leave a question unanswered and has been the lifeline for knowledge and support for many people. She personally welcomes every single member, responds to almost every post with fantastic information and links and works tirelessly with many research opportunities and directly with endos to ensure the whole journey of Cushing’s is constantly being improved. Even when she was in hospital for a few months last year she was logged on every day, helping other members of the group despite being incredibly ill herself. She deals with everyone in a patient, supportive, informative manner even when emotions are running high and is always up to date with the latest information.”
This is what Pauline told us:
My pituitary tumour was found by chance but didn’t start producing excess ACTH until 18months later. I was tested & diagnosed with Cushing’s Disease. Although a retired nurse I didn’t know a lot about Cushing’s or Secondary Adrenal Insufficiency. I didn’t get much support from the hospital team so turned to social media for groups. The only ones I found were US based but their health system was so different to ours, so decided to start one for people in the UK. This was July 2016.
I had no idea what would happen or if people were interested, however with a small core of us the group has grown to 2,500 members with another 1000 having been through the group.
I wanted to be able to inform people about Cushing’s & in doing so encourage them to advocate for themselves to get the treatment they deserve.
I couldn’t do it without the support of my other Admins & several of the leading Endocrinologists.
I was already a member of the PF & as the group began to grow we came under their “umbrella“.
The PF has continued to grow & develop over the years, I hope this continues as the need to educate both medics & the public is essential for all of us dealing with a pituitary condition.
Happy 30th Birthday Pituitary Foundation!