If you have taken a moment to look at the CARES Foundation Emergency Medical Response Campaign you will note a curious choice of words. While the first few lines reference emergent treatment of “CAH,” it quickly is replaced by a phrase foreign to many within the CARES Community: “adrenal insufficiency.” So what is adrenal insufficiency and why do we use such wording throughout our EMS Campaign?
Adrenal insufficiency refers to a group of medical conditions, all characterized by improperly functioning adrenal glands resulting in inadequate production of steroid hormones, most notably cortisol and in some cases aldosterone; two all-too-familiar names to those affected by CAH. What many don’t know is that there are other individuals who suffer from impaired adrenal function: those affected by Addison’s disease, adrenal tumors, impaired pituitary glands or hypothalamus due to cancer or a head injury, and those on long-term steroids for conditions such as rheumatoid arthritis or transplant recipients.
CARES Foundation has never restricted its advocacy to “just for the good of the CAH Community” when there are others who can benefit from our work. During the course of our campaign for universal, mandated newborn screening, we joined forces with other national disease support organizations calling for comprehensive screening. Of course our focus and the area of our expertise is in CAH, however, we always strove for panels including all 29 conditions recommended for testing in the neonatal period by the American College of Medical Genetics and the March of Dimes. In our campaign for pre-hospital treatment of CAH, we once again have built a coalition including the National Adrenal Diseases Foundation and Pituitary Network Association.
And as the saying goes, there is strength in numbers. The salt-wasting form of CAH affect about 1 person in 12,000, Addison’s disease occurs at a rate of 40-110/million, and hypopituitarism 460/million. Without even adding in Non-classical CAH patients, those on long-term steroids for other conditions such as rheumatoid arthritis and organ transplant recipients, we can readily state adrenal insufficiency affects 1 in 500. All of whom are at risk of adrenal crisis, and for whom an immediate shot of Solu-Cortef® in times of illness or injury could mean the difference between life, disability, and death.
The campaign goes on…