One thought on “What is congenital adrenal hyperplasia (CAH)? (4+)”

1. I am a parent of a daughter who has adrenal insufficiency due to the destruction of her pituitary gland from autoimmune disease that occurred in 1997. This resulted in Hypopituitarism, including secondary Addison’s disease/adrenal insufficiency. Our 13 years of experience with adrenal insufficiency has been a struggled one. I continue to accompany my datehugr through medical situations to insure that it is clear that she is adrenal insufficient and that the critical medication is administrated. It has and still remains a traumatic event. I feel that I have become more expertise in the area than many who actually attend medical school. My datehugr has been assisted a few times over the years by EMS staff who had no idea what her medical alert bracelet meant. Many medical professionals in clinic and hospital settings also are not familiar with the disease and do not understand. I have watched in horror while my datehugr is slipping into adrenal crises and have to remind staff to obtain and administer the drug quickly. One time the dose was dropped on the floor and the bottle smashed. I was told it would take an hour to obtain another dose from the pharmacy – my datehugr did not have an hour. Another time, the dose was not in its appropriate place or not ordered. The treating staffs did not seem concerned until I became upset, upon which a specialist would intervene to get the medication immediately. My datehugr’s neuroendocrinologist has given us her pager number and asked that when we encounter medical situations to page her and hand the phone to the treating medical staff. This is a comfort as she has always immediately responded to the page from wherever she is. Sometimes she is even out of the United States. My most haunting fear is that my datehugr will be taken from our family abruptly from adrenal failure. I feel that each time we intervene to receive the appropriate medical treatment we have dodged another bullet. I am afraid that one of these times I will not be present or the neuroendocrinologist will not be available during a time my datehugr is not able to advocate for herself. My frustration is that research and progress is slow on all fronts, but my hope is that Emergency Medical Response Protocol for adrenal insufficiency (AI) will be adopted in every state.

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