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

Copyright © 2020 Adrenal Insufficiency United, All rights reserved. We're sending this email to those who've signed up on our lists, visited or store or attended past conferences and events. Our mailing address is: Adrenal Insufficiency United PO Box 168 Oregon City, OR 97045

RIP Sarah: Another Senseless Cushie Death

Sarah Thomas, 30, died six hours after EMS refused
to take her to the hospital oradminister her the life-saving Solu-Cortef injection.

Incompetent paramedics told dying woman:' You just have a tummy bug'


I send my most sincere condolences to Sarah's friends and family.

I am so rattled. This is unjust. It's so avoidable! 


A simple injection of Solu-Cortef could have saved Sarah. It costs less than $10. 

Taking Sarah to the hospital could have saved her. 

Something must be done to stop the medical profession's ignorance about adrenal insufficiency and cavalier know-it-all attitude.

We must be able to count on someone to help us.  How can we rest easy each day, wondering who will listen, who will believe us? 

Please support the group, Adrenal Insufficiency United, whose goals are to educate EMS personnel and ensure that Solu-Cortef is carried on every ambulance in the US.  Purchase one of their emergency kits and give a CD to the fire stations in your area. 

You will save others as you work to save yourself. - Melissa


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Incompetent paramedics told dying woman: ' You just have a tummy bug'

Woman would have survived if she was taken to hospital and given a simple injection

By News agencies, published by the Telegraph

10:17AM GMT 20 Nov 2013

Two paramedics have been struck off for blundering over the tragic death of a dental nurse after telling her: "You just have a tummy bug."

Sarah Thomas, 30, died at home because her symptoms were not taken seriously by the two "incompetent" ambulancemen who refused to take her to hospital.

Paramedic David Glover told her she just had the stomach bug – even though she was barely conscious and struggling to breathe.

Ms Thomas would have survived if she was taken to hospital and given a simple injection. But she died six hours later.

A disciplinary hearing was told Glover and colleague Michael Davies then tried to cover up their mistake by fabricating her clinical record.

The pair were banned from working as paramedics by a disciplinary panel of the Health and Care Professions Council.

Panel chair Ian Crookall said: "The public would be appalled at the lack of competence.

"The facts of the case would undermine public confidence in the profession in the eyes of any member of the public who was aware of the circumstances.

"When there is a case of proven dishonesty it is necessary to uphold regulatory standards by demonstrating that such behaviour is not acceptable."

Sarah was visited at her home in Port Talbot, South Wales, by the two paramedics following a 999 call.

A Health and Care Professions Council hearing was told how Glover failed check her vital signs including pulse, breathing and blood oxygenation.

Ms Thomas had diabetes and her pituitary gland had been removed after surgery for a brain tumour. (Blogger note: Sarah had Cushing's and secondary adrenal insufficiency after pituitary surgery).

But the hearing in Cardiff was told that Glover failed to ask suitable questions about her medical history.

He told her: "You just have a stomach bug. You are better off here Sarah, this is the best place for you".

But Ms Thomas died just six hours later of adrenal insufficiency – when her body stopped producing the necessary steroid hormones. (Blogger emphasis).

Glover and Davies, who were working for the Welsh Ambulance Service NHS Trust, then "colluded to fabricate a patient record".

The pair added information they got later from another paramedic in an attempt to cover up their failures.

Mr Crookall added: "The panel was of the view that the established failure to conduct a proper assessment.

"The subsequent dishonest fabrication and collusion are very serious, representing a disregard for fundamental and core duties.

"It had the potential of causing very significant degree of harm – including death."

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I only have two words: NO SHIT (Blogger emphasis).