Cushing’s resources

I wanted to get a little list together of some of the good resources I’ve found on my Cushing’s journey so others can easily find the info (and so can I instead of trawling through dozens of bookmarks)

Videos:

Update on the Management of Cushing’s Disease – from August 2019, a presentation from a medical professional for others but with some good information that patients can use as well.

NIH – National Cushing’s Patient Education Day 2017 – a video from the conference, lots of information around testing, treatment and the aftermath of Cushing’s for patients by some of the top doctors. Includes stories from patients.

Tiara’s story – how one woman coped/is coping with her journey.

How I Survived Cushing’s Disease – Another woman’s story one year after surgery.

HER Health Story – the story of Sharmyn and her Cushing’s Disease.

Blogs:

Cushie Blog – a blog by MaryO who seems to have been the leader in making others aware on the internet of Cushing’s. Lots of practical advice, help and support and information on the latest research.

Cushing’s with Moxie – One woman’s personal journey that has turned into her own desire to bring information to the masses and awareness of Cushing’s to the forefront. Personal posts and advice.

Sites:

Cushing’s Support and Research Foundation (CSRF) – Dedicated to Cushing’s support and research, this organisation has tons of resources for patients, doctors and carers and holds annual meetings in the US. They work closely with patients to get the information out there; I’ve been helping by being part of a group this year on Facebook to answer questions that will be discussed at this years conference.

Cushing’s Disease News – Does what it says on the tin. All news about Cushing’s Disease.

Pituitary Foundation – UK based charity to deal with all pituitary diseases, including Cushing’s Disease. They have a support helpline, information on the best hospitals and doctors to see and lots of informative leaflets to help patients, doctors and carers.

Pituitary Tumours PDF – Not a site but one PDF with a lot of interesting information on pituitary tumours, including why you should have dynamic contrast in your pituitary MRI.

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