Clearly Alive: An Open Letter to Senators

I will never forget April 19th, 2013. That was the day that I firmly believed I was going to die. I was alone, crashing rapidly towards an Adrenal Crisis, and the medical community was grossly mishandling my care. Due to their delay in my treatment, I am still working on regaining my strength two years later.

Currently, many states (including my own) forbid ambulances from treating us. Isn't that beyond ridiculous? Our lives apparently are not worthy of saving. Adrenal Insufficiency United is petitioning to change that. I wrote the following letter to be presented to Senators to help support AIU in their cause. Feel free to share this with anyone and everyone. Let us raise awareness about Adrenal Insufficiency so that the horror stories of mistreatment by medical personal are eliminated.

"Ask me about life-saving steroids."

My name is Amber and I live with Primary Adrenal Insufficiency (PAI). I was diagnosed in 2005 at the age 15 after over a decade of searching for the reason behind the chronic illnesses and fatigue. In the years since proper diagnosis, I have come close to death due to the lack of proper training of first responders and emergency medical personnel on a number of occasions but also specifically in Scottsdale, AZ (2006), Bellingham, WA (2010) and most recently in Carrolton, TX (2013).

A clinical adrenal crisis can be sudden. However, it is more helpful to view it as a bell curve, or continuum for the adrenal insufficient patient. I presented to my endocrinologist on April 19th, 2013 with constant nausea, persistent headaches, increased fatigue, unstable blood pressure, low pulse, increased body temperature, low heart rate and low blood sugar. If she had injected me with corticosteroids immediately, my deteriorating condition would not have progressed any further.

Immediately following her visit, I was at the Primary Care Physician. Tremors ensued with extreme disorientation; episodes of blacking out began with accompanying uncontrollable convulsions. This progression would have been immediately interrupted if the physician had injected me with corticosteroids.

Although I was presenting with an increasing number of signs of an adrenal crisis, the physician believed I would be in better care with an Advanced Life Support Ambulance, which theoretically should have been able to administer medicine and start IV fluids. Unfortunately, the EMT’s only felt the need to transport me to the nearest hospital emergency department as I was slipping in and out of consciousness. They did not administer corticosteroids and blatantly ignored my medical alert bracelet. When I arrived at the ER, the physician on call was unfamiliar with adrenal insufficiency.

He did not follow the NADF’s widely published protocol to administer IV saline immediately along with 100 mg solu-cortef or solu-medrol. The waste of community medical resources (time and money) was totally unnecessary. At any point in this nightmare, an immediate injection of corticosteroids (costing under $10 a vial) would have stopped the crash. With each delay in treatment, the cost (both monetarily and physically) increased drastically.

In the months following my latest near death event, I visited fourteen different specialists and received several new diagnoses. By far the most crippling diagnosis is PTSD (post-traumatic stress disorder). Mayo Clinic defines PTSD as a mental health condition that's triggered by a terrifying event. Symptoms include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event. My adrenal crisis happened on April 19th, 2013 but I still suffer from vivid flashbacks and horribly realistic dreams of first responders killing me due to their lack of ability to administer corticosteroids.

The current archaic protocol is taxing the already strained medical system causing needless pain and suffering. It can also easily be viewed as condemning adrenal insufficient patients to a death sentence.

I recommend a change in this protocol. Both the financial cost and risk potential to organizations is minimal. Corticosteroids are reasonably priced (under $10 per vial) and have a shelf life of 5 years. They are also a very low risk drug. One dose administered when not needed will cause no harm. One dose delayed when critically needed will cause irreversible damage, ultimately resulting in death. I prefer to remain Clearly Alive and need your help to do so.