No Need to DI Campaign
October is Pituitary Awareness Month and this year we are focusing on campaigning to change the name of diabetes insipidus.
We are working to change the name to
pituitary insipidus - desmopressin dependent (PIDD)
as this was the most popular choice in our 2019 survey.
The word diabetes causes confusion and often leads people, including medical professionals, to assume the patient has diabetes mellitus. Many DI patients have had experiences of medical professionals making this error and trying to treat them incorrectly. In the past few years there have been a couple of fatalities due to this confusion and it needs to stop.
There is #NoNeedToDI
What are we doing?
We are working with an incredible team of dedicated endocrinologists including Prof John Wass, Dr Malcolm Prentice, Dr Miles Levy, Prof Stephanie Baldeweg, Dr Helen Simpson, the Society for Endocrinology and many others. The work has already been going for months and will be continuing for the foreseeable future as this is no small task. There are lots of things going on behind the scenes and lots of plans in place for the next few months so we look forward to sharing these with you soon.
We are currently working on:
- Updating our own resources with the new name. The change of name starts with familiarity and the more PIDD is used, the more people will feel comfortable with it and recognise it
- Running a petition to back our work with signatures from patients, carers, friends, families, doctors, nurses and anyone else
- Publishing an article in The Endocrinologist
- Releasing a new fact sheet – ‘About Pituitary insipidus - desmopressin dependent (PIDD)’
- We will be sharing stories, articles and more throughout October so keep an eye on this page and our social media channels
- And more!
How can you help?
The most important thing you can do is sign our petition here* and share it far and wide! The more signatures we have, the more power we have for our campaign. Don’t forget to use #NoNeedToDI when sharing on social media
Keep an eye on our social media pages for lots of resources and stories during October. Please remember to like, comment and share to increase our reach!
Use our social media graphics to brighten up your social media pages!
Other downloadable graphics:
We have also released some limited edition face coverings in black and grey to help raise even more awareness. Get yours here!
Resources and Links
- An introduction to the campaign from Menai Owen-Jones, CEO
- Charlie's Story - Charlie's sister tells us the tragic story of how her brother lost his life to diabetes inispidus
- Diabetes mellitus vs. pituitary insipidus comparison table
Download image - to use online
Download pdf - printable version, you may wish to share with your GP or carry with you
- Kane's Story - Kane passed away in hospital after going in for a hip replacement but not being given appropriate treatment for diabetes insipidus
- Joy's DI Story
- Video from Society for Endocrinology - What is diabetes insipidus (pituitary insipidus - desmopressin dependent)? What causes it? How is it treated?
- Claire's Story
- A Parent's Story
- BMJ Podcast
- Twitter Chat - Wed 21st Oct @ 7pm
- Becky's video - DI patient Becky has created this video explaining the differences between diabetes insipidus and diabetes mellitus and why she thinks th ename should be changed
- Molly's Story - Molly suffered hyponatremia while in hopsital during the COVID-19 pandemic