How and why we started
In those with adrenal insufficiency illness or trauma can cause a life-threatening adrenal crisis. Death or permanent disability can occur in as little as 30 minutes. However, because it is considered rare not all EMS agencies have protocols to treat it. Therefore, emergency medical personnel may not have the training and awareness of how quickly adrenal insufficiency can spiral into shock, coma and death. We find that even ER personnel may not be trained in adrenal insufficiency.
Before social media was so widespread we were virtually alone. We struggled learning as much as we could, yet our insides churned as our friends and family suffered. Plagued by nightmares about what would happen if we were not there to give our loved ones the injection needed to save their lives, many of us felt anger, depression, hopelessness, and frustration…..but ACCEPTANCE….that this was the best we could get? No Way! We knew, we felt deep down, that there had to be something better. So in our own ways we fought, but still we fought alone.
Then along came the internet and social media….We started to find each other and realize that we WERE NOT ALONE! Our founders saw that creating awareness and emergency protocols would only be possible if all those affected by adrenal insufficiency united as one voice. Adrenal Insufficiency United is a grassroots group of affected adults, family and friends of those with adrenal insufficiency our numbers are growing each day.
In July of 2016 AIU consolidated with the Adrenal Insufficiency Coalition (AIC). AIC is committed to improving patient care through research. Our mutual goals and complimentary approached combined to create a balanced platform able to address the wide variety of issues faced by the AI community. Our new Research Library is just one of the additions AIC has brought to AIU.
Our Mission Statement
Adrenal Insufficiency United is working to improve the lives and empower those affected by adrenal insufficiency through advocacy, awareness, collaboration, education, research and support.
Our vision for the future
We see a future where protocols to treat adrenal crisis are Nationwide, where needless suffering and death are prevented, and where awareness leads to new and better treatment options . Every person affected by adrenal insufficiency needs a chance to reach their full potential.