Friday, November 13, 2020

COVID Care + AIU SURVEY for Post Op Cushies

Hello dear Cushie friends. 

I hope all y'all are staying safe and hunkering down in Month 8 of the COVID-19 pandemic. We must be so careful. Be sure to check out the the National Adrenal Disease Foundation's COVID survey and one-page handout to guide medical professionals treating us for both COVID and adrenal insufficiency. Please take a moment to print this, place the copy in your emergency kit, and email it to loved ones likely to accompany you to the ER.

I also wanted to share an email I received today. I encourage all post-op Cushing's patients to participate in this survey for Oregon Health Sciences University. While I'm so pleased that a researcher seeks to expand medical knowledge on the disease we pick up on the other side of Cushing's, I want to stress (haha) that we Cushies must try to describe how horrible our care is as we transition from one disease to another. We hear that endocrinologists routinely fail to prepare us properly for AI before surgery, and we continue to struggle post op without proper guidance that every other disease seems to be getting. That is not fair, and we deserve better.

Now it is our turn. Your participation in this survey will amplify the voices of the Cushing's community. Please do not let the opportunity pass you by. I'm going to make the medical establishment pay attention to us, if it is the last thing that I do. I need your help.

Take care and stay safe, friends. ~ Moxie Melissa

P.S. Be sure to follow my Fight Cushing's with Moxie Facebook page and become my FB friend. Send me a pm and introduce yourself. I'll help you all I can and make sure you are in the groups that will help. Be sure you are part of our extensive online community.

Please help us collect valuable data. All answers are de-identified and confidential.

AIU has been contacted by a health professional at the Oregon Health Sciences University (Moxie added link to Cushing's info) in Portland, Oregon. She's asked us to share this and spoke how much more research and knowledge is needed for our community. Here is the link to the survey. This survey is for anyone -- in any country -- affected by AI. If you suffer from any form of adrenal insufficiency, are a relative, or a medical professional working with someone with this disorder, you are invited to participate in this survey.Your COVID exposure or status is only one part and will be towards the end of the survey.

The survey will take about 10 minutes to complete.

Survey Intro:

"People with Addison's disease or Adrenal Insufficiency (AI) are at risk for adrenal crisis in the event of an illness, but little is known regarding the risks associated with COVID-19.
This survey was developed by a collaboration of patient advocacy representatives and endocrine medical professionals. It will take approximately 15 minutes to complete. By combining many responses we hope to understand more about individual risks for the development of adrenal crisis during this pandemic, and to identify treatments that will influence clinical decisions to improve self care in the future."


Take Survey
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