CSRF Welcomes Cushing’s Community in Promoting Awareness Day, April 8
From bolstering a list of recommended physicians to sharing patient stories, the Cushing’s Support & Research Foundation (CSRF) offers various ways for supporters to mark Cushing’s Awareness Day, taking place on April 8.
The day is set aside annually to call attention to the more than 6 million people diagnosed each year with Cushing’s disease, which results when a tumor in the brain’s pituitary gland releases large amounts of adrenocorticotropic hormone (ACTH), leading to excessive cortisol production.
April 8 marks the birthday of Harvey Cushing, known as the father of neurosurgery, who first described the disease in 1932.
“Every year on the birthday of Dr. Harvey Cushing, those of us affected by this disease reflect on our own journeys and think about the work this man did to identify ‘polyglandular syndrome’ back in the day,” the CSRF states on its webpage.
Supporters can contribute with submissions, due by April 7, and sent to [email protected]. Contributors’ names will be entered into an April 8 drawing on Instagram for a shirt or sweatshirt from the nonprofit organization.
One suggestion is patient stories for publication on the CSRF’s website. Such stories are particularly appreciated by newly diagnosed patients, according to the organization.
Patients are also encouraged to submit photos for posting on the CSRF’s new Instagram platform, along with a paragraph describing the photograph. Individual social media shares should include the hashtag #cushingsawarenessday.
Another suggestion is to create a video of less than 50 seconds that the organization can post on Instagram. The video should be “an ‘elevator speech’ about Cushing’s, your journey, coping mechanisms, exercises that have helped you … almost anything that contributes to the collective community consciousness,” the organization states.
Supporters are also asked to take photos of themselves wearing “cortisol” and “brain” shirts available at select times through the organization’s Bonfire store. The CSRF may post these photos on Instagram.
Cushing’s disease develops gradually and its symptoms are similar to other illnesses, including Cushing’s syndrome. Because of this, the disease can be difficult to diagnose.
To help mark Awareness Day, the organization is asking patients — in the U.S. and in other countries — who were properly diagnosed and treated to submit their physician’s name and contact information, which will be added to the CSRF doctor list. The organization is particularly interested in non-specialists, but welcomes information on “great” endocrinologists and surgeons as well.
Similarly, patients whose symptoms or tests were dismissed by an endocrinologist, but who were later appropriately diagnosed by a different physician, may also forward those names and contact information. The organization will send those endocrinologists a packet of educational information about Cushing’s. Patients will remain anonymous, unless they state otherwise.
During the week of April 12, the organization will host a Zoom roundtable discussion about community needs. The discussion will explore trends among undiagnosed individuals who have high levels of cortisol. Reserve a spot here.