Adrenal Insufficiency United

📣We asked the adrenal insufficiency community:

"What would you most like healthcare professionals to understand about adrenal insufficiency?"

Hundreds of responses revealed several clear themes:

💙 Adrenal crisis is a medical emergency. Patients repeatedly emphasized that delays in steroid treatment can be life-threatening.

💙 Listen to patients and caregivers. Many shared experiences of feeling dismissed despite recognizing the signs of an impending crisis.

💙 Adrenal insufficiency is not one-size-fits-all. Symptoms, stress responses, and medication needs vary significantly from person to person.

💙 More education is needed. Many respondents reported that healthcare professionals outside of endocrinology were unfamiliar with adrenal insufficiency, stress dosing, or emergency treatment protocols.

💙 The impact extends beyond emergencies. Patients described daily challenges with fatigue, quality of life, medication timing, and managing a condition that affects the entire body.

Thank you to everyone who shared their experiences. Your voices help us identify gaps in care and advocate for improved awareness, education, and outcomes for people living with adrenal insufficiency.

AIU is using these reponses to develop resources for newly diagnosed, fundamentals of adrenal insufficiency and resources for healthcare professionals.

If you have adrenal insufficiency, hopefully you know to always have your solu-cortef with you. One of the most difficult parts of adrenal insufficiency is how cumbersome administering the injection is.

Every time we have a conference we offer injection trainings by registered nurses to help people become familiar with the act-o-vial.

At our conference in Minneapolois a couple of months ago Jason Dunn provided the training for conference participants and then recorded a video on how to administer the injection.

Please note that this is for the solu-cortef act-o-vial. Some people are given a different injection or solu-cortef that has one vial of liquid and one of powder.

Please watch this video. Make sure you carry your injection with you at all times. Do not assume that EMS will be able to administer, as many are not legally able.

Jason's training video is on our Emergency Preparedness page.

https://aiunited.org/emergency-prep/

All this talk about cortisol!! Cortisol can get a bad rap in mainstream media, but what happens if you don' t make enough cortisol or any at all??

Here is a look at what cortisol is an while too much can be bad, not enough can be a serious condition.

Here is a the link to join Rare Patient Voice, through the AIU link. AIU gets some money for each person who signs up using this link. https://rarepatientvoice.com/adrenalinsufficiencyunited/

There are very consistently studies for CAH, also for cancer and other causes of adrenal insufficiency.

Healthcare works best when patients feel empowered to speak up. We encourage patients to share their health stories so others like them feel empowered to share their story and help them advocate.

AIU is 15 years old and 2026 is a year long celebration for us!!

Fresh off of being at NCCN, and then our own conference with both in-person and virtual attendees we are looking ahead to the rest of the year and beyond.

We are asking if AIU, has made an impact in your life that you help us continue to do that. These pictures show what $15 a month can do to help AIU, or even a one-time $15 donation. We have over 16,000 members in our groups. Imagaine if everyone could do one of these two things!!

AIU promises that every dollar goes back to providing support, education and advocacy for all of those in the adrenal insufficiency communiy and their caregivers.

https://givebutter.com/make-your-impact-on-aiu-in-may-v8efi8

Last week we shared the basics on what adrenal insufficiency is, the body's inability to make enough cortisol. This can happen from many different causes, but typically is broken down into primary or secondary (secondary is often loosely used for both secondary and tertiary).

The HPA Axis is a key part of the endocrine system and the type of adrenal insufficiency in determined by where the disruption of cortisol production occurs, the adrenals, pituitary or hypothalamus.

Please note all forms of adrenal insufficiency require treatment by steroids and have the potential of leading to an adrenal crisis. Therefore everyone should have instructions from their doctor on stress dosing and a perscription for an emergency injection. More on that coming soon.

AIU knows that so many are looking to connect with others who just get it.

Or maybe your are going through something with your adrenal insufficiency and need to find someone with a similar personal experience.

Maybe you are a parent of a child with adrenal insufficiency and want not feel as alone on this journey.

Maybe you are looking for how to get involved with AIU, or to see what else we have going on.

Does your significant other, parent, siblng or friend have adrenal insufficiency and you just want to understand more?

For all these things and more we have Facebook Support groups to help you with any form or cause of adrenal insufficiency. We are based in the US, but our group members are workdwide.

Visit our webiste here, to find which group(s) right for you, https://aiunited.org/community-support/

AIU knows the importance of nurses in healthcare and wants to take.a minute to recognize nurses and the vital piece of heathcare that they are. From your P*P, to endo, to the ER they are integral to good healthcare and often times the one who the patient talks to most often, and is usually the link to communication wtih your doctor through phone or portal interactions.

AIU appreciates all that nurses do!!

Going back to the basics because they are so important.

Let's take a look at what adrenal insufficiency is....

For more, look at our website here, https://aiunited.org/information-adrenal-insufficiency/