Adrenal Diseases 🦋
@Addisons_and_AI
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Adrenal Diseases Support Global/Group is the world’s largest social media support place for persons with Adrenal Diseases and Adrenal Insufficiency.
Worldwide
Joined May 2016
VIDEO: At long last our video about Smartphone Medical ID Apps is here! #AdrenalInsufficiency....
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Today is international Addison's awareness day! Here is a picture that might help spreading the awareness regarding this disease. #addisonawareness #addisonday #addisonawarenessday
#TogetherWeAreAIStrong
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It's #adrenaldiseasesawarenessmonth Have a peek at our page on Facebook, as this month we'll be sharing a lot of stories of patients on how they got to their diagnosis! https://t.co/v5Nw55y6iY It's a bit lenghty to post on limited twitter, sorry about that!
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As well, we'd like to remind everyone to familiarize themselves with the stress dosing recommendations for illness in AI- and make sure you have extra steroids available at home in advance. One excellent guide for stress dosing can be found here:
adrenals.eu
Increasing the hydrocortisone to prevent an Addison crisis This folder explains how you can prevent an Addison crisis (also known as an adrenal crisis) by increasing the dose of hydrocortisone...
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If you'd like to read the NADF announcement, that can be found here:
nadf.us
The National Addison’s Disease Foundation was formed in 1985 by a young couple as a result of their experiences with Addison’s disease.
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The team at ADSG agree that at the least, managing illness is more complex in AI, so a little extra care in avoiding infection seems wise. Instructions for higher risk groups can be found here:
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Many of you are wondering what to do regarding preparations for the COVID-19 virus. Our friends at the National Adrenal Diseases Foundation have recently issued updated recommendations for all patients with AI to follow the CDC recommendations for higher risk groups.
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Angi Mcelfresh Kelly Price Jadyn Wingier Julia Stangl Rohan Talim Laura Catheryn Early Sarah M Burns Deanna Nicole Brown Brandon Dailey Shawn McQuade Fifion Jones Cassie Daily Brandon Dailey Ronda Bowyer #RareDiseaseDay #Adrenalinsufficiency #AI #TogetherWeAreAIStrong
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Melissa Rae Hope Carla Vandyne Brittany Moser Madelyn Eugenia Elaterman Callum Cartlidge Ryan Steele Towle Wallace Wesley Barr III Kris Clay Phillip Hobt Christina Lynn Androff Crystal Amber Sloop Natasha Sosnoski
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Colby Martell Grace Cole Christine Hadgisava “Christy” Nina Parsons Courtney Hopkins Timothy Theis Melissa Angotti Marshall Catherine (Cat) Jane Stephenson Kristen Flowers Aubrey Leigh Kinney Jessica Pearson Samantha Quantrill Sandra Glenn Joanne Lyons Emiehl Volkand
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Evan Robert Strom Louise VanHine Charles 'Chuck' Dwayne Glandon Greg Morgan Luke Wright Jill Smith Cody Dale Lohman Steven Wessell Callum Cartlidge Tyler Morgan Joyce Kaub Bergen Heather Faith Wagner Megan O'Shea Lillich June Buchanan Kat Pelletier Tracie Elizabeth Alam
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Lynn Ann Wrobleski Ronda Allen Natalie Preston Ryan James Kennedy Patti Phears Konnor Swarts Christopher Casstetter Brian Daniel High Joshua Dylan Steiner Scott Stickland Bonnie Wolff Rebecca Castle Joyce Syers Hayes Julie Savard
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Bonnie Pace Wendy Hall Caitlin Lazaro Trisha Ann Eberline Denny Wiese Marsha Atwood Jennifer Adams Cynthia Michael Stephanie McCoin Frisby Sarah Lazerson Kevin Patrick Kersting Jake Black Stephanie Brier Donna Rose Huck-Block James Aikenhead Alex Leonard Ellie Rae Tate
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Below you will see those we've lost in just the last three years. They will not be forgotten! It's so sad to see names that may still be here with us if they or their medical team were properly trained.
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There's not enough focus on what is actually needed to allow us the ability to function day to day or keep us alive when body stressors, like an illness burn, through our "normal" daily doses.
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There's so much focus on not taking "too many" steroids causing something we refer to as "steroid guilt or steroid shame".
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with proper education for physicians and patients with training on when to take extra steroids which we call "updosing" and using the emergency injections required in a crisis scenario.
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We need better education to prevent so many deaths complicated by AI. Of the deaths in 2019 alone about 42% may have been preventable ,
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It is still taught in medical schools that this is a “once in a career” disease. The medical text books are outdated and many doctors will not recognize studies from other countries, as if we are a different species.
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Adrenal Insufficiency is a rare disease. So rare that the "Specialists" who should know how to care for us often just do not have the knowledge needed. They are not up to date on the newest research and treatments as they may never see an AI patient in their entire career.
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