To celebrate Cushing’s awareness day, we’ve released a brand new Cushing’s awareness video to help you understand Cushing’s and spot its symptoms.
This video is developed by experts and explores what Cushing’s is and what symptoms you may develop if you have Cushing’s disease. You can find out more about Cushing’s on our website.
This video was created by SIMBA CoMICS, in partnership with Professor John Wass and a lived experience review panel. You can read more about our lived experience reviewers below.
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Lived Experience Reviewers
As well as being created and reviewed by endocrinology experts and clincians, this video was also reviewed by people with lived experience of Cushing’s. In reviewing this video, our lived experience reviewers were able to provide valuable insights on tailoring the messaging of this video to meet the needs of people living with Cushing’s disease.
We want to say a huge thank you to our two lived experience reviewers, Pauline Swindells and Caz Brown, for their involvement in this video.
Pauline Swindells
Pauline was diagnosed with Cushing’s disease 10 years ago, at age 62. Her tumour was found by chance, however it didn’t start secreting excess ACTH until 18 months later, when she was then diagnosed and had surgery.
Although a retired nurse, she didn’t know a lot about Cushing’s disease but The Pituitary Foundation website was a great resource. Looking on Facebook, the only groups she found were US-based. Nine years ago, she decided to start a UK-based group which now has over 2800 members, although not all will have Cushing’s. Pauline likes to research and read new papers about Cushing’s so information can be shared with the group, giving members up-to-date information and enabling them to advocate for themselves when needed.
“I’d like to say I’m back to my pre-Cushing’s self but I’m not, I’m still steroid dependent & have other issues, not all related to Cushing’s, however it does mean I can spend lots of time on the group supporting & helping members alongside the other admins.”
Caz Brown
Caz was diagnosed with Cushing’s disease in 2018 and has been in remission since her surgery in 2019, after having symptoms for 4 years. The Pituitary Foundation and the Cushing’s UK support group helped throughout the whole journey with valuable information, support and insights into the process, including advice on returning to work.
Since Christmas 2022 she has been volunteering for The Pituitary Foundation, initially as an admin in the Cushing’s UK support group, responding to enquiries submitted about Cushing’s on The Pituitary Foundation website and helping to run zoom calls. More recently, she has become a Pituitary Ambassador, helping to spread awareness of the charity to patients and medical organisations. She has also helped at some of the in-person get togethers, including talking about her journey and being a welcoming face for the attendees.
For more support and information about Cushing’s, you can join the Cushing’s UK Facebook group.
