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.
There is a saying attributed to Dr Cushing that is so very relevant with this and really any other disease: “A physician is obligated to consider more than a diseased organ, more even than the whole man – he must view the man in his world.” We are thankful for the physicians who understand and practice this daily, and we are committed to doing our part to find and share with physicians who need help to see diagnosis and treatment in the same way.
This year, we would like to engage with our membership on several outreach and awareness opportunities. The time commitment on these ranges from one minute to several hours. Take a look and see if you might be interested in helping us with this project! All submissions are due by 11:59pm April 7 but the sooner the better. All contributors will be entered into a drawing on April 8 for one shirt / sweatshirt of your choice from our Bonfire store, drawing to be done on IG.
ADVOCACY AND AWARENESS OPPORTUNITIES:
- Is your patient story on our website? If it has been more than a few years, would you be interested in updating it to share where you are now? If it is not on our website, would you consider writing it for publication? These stories remain one of the most favored resources for newly diagnosed patients.
- We have a new Instagram account (@csrfcommunity) and would love to feature some “with and without” photos along with a paragraph description created by those willing to share a glimpse into their journey. This could be expanded to include a link to your full story published on our website, if you choose. If you post to social media, consider including the hashtag #cushingsawarenessday.
- Speaking of Instagram, another opportunity is to create a short video that we can upload that gives an “elevator speech” about Cushing’s, your journey, coping mechanisms, exercises that have helped you…almost anything that contributes to the collective community consciousness. Aim for less than 50 seconds please!
- We have made these cortisol and brain shirts available a couple of times since November through Bonfire, and we would love to feature a photo of you wearing yours if you have one! There are a couple of examples already up on our IG.
- Do you have a great endocrinologist and/or surgeon who diagnosed and treated you correctly? We have recently completely revamped our doctor list and would love to include any doctor, especially a non-specialist, who has gotten this right for a patient. Please share their name and any contact information you have and we will add them to our list: https://csrf.net/doctor-list/looking-for-a-doctor/
- Did you experience an endocrinologist who dismissed your symptoms or tests and you later were appropriately diagnosed elsewhere? We would LOVE to send that first doctor a packet containing numerous educational materials and an offer to be a community partner when they have patients suffering from hypercortisolism. Please share their name and any contact information you have and we will do this without sharing your name (unless you prefer that we do!).
- Join our member round table zoom the week of April 12 to discuss the needs in our community. We’d like to have part of the conversation focus on trends in “undiagnosed and seeking” patients. Even if high cortisol is not caused by a tumor, its damaging effects to quality of life and long-term health are just as dangerous. What is your opinion on what to do with a patient who does not have endogenous Cushing’s but DOES have persistent high cortisol? If you would like to participate in this discussion, please RSVP using this form.