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What is the best way for a patient to alert you to and educate you about autonomic dysreflexia (AD), an emergent, potentially life-threatening medical condition most doctors and nurses have never heard of?
Autonomic dysreflexia (AD) is a condition that can occur in anyone who has a spinal cord injury at or above the T6 level which causes the blood pressure to rise to potentially dangerous levels. The primary risk of Autonomic dysreflexia is stroke. It is a potentially life-threatening condition. If Autonomic dysreflexia is left untreated, the body's attempt to control blood pressure will severely decrease the heart rate. This, combined with uncontrolled high blood pressure, can be fatal. For this reason, it is very important to treat this condition as soon as possible.
However, getting doctors and nurses, especially ED triage nurses, to recognize and respond to autonomic dysreflexia is an ongoing challenge for people with spinal cord injury/damage (SCI/D).
It happened to me during a recent trip to the ED for a gallbladder infection, the pain from which triggered AD. When I arrived at the hospital, my BP had spiked to 215/119. I was sweaty and had a severe headache, blurry vision, and anxiety, all of which are symptoms of AD. Yet despite alerting both the nurse who took my vitals and the triage nurse that I was having autonomic dysreflexia and showing them the wallet card I carry about AD, neither recognized my condition as potentially life-threatening -- I was actually taken back for treatment after a pre-teen boy with an ankle injury who was in no apparent distress. Luckily, I made it through this bout of AD without incident (except for the pounding headache).
I wish I could say that my experience was the exception, but it's not. Almost everyone I know who is prone to AD has had problems at one point or another with getting health care professionals to recognize and treat autonomic dysreflexia, even when we bring educational materials about the condition with us. While there are a lot of nurses out there who listen to what we're telling them, there are still too many who dismiss us as demanding patients who have self-diagnosed off of the Internet and are trying to tell them how to do their job.
So I'm coming to those of you who work the front lines of medicine for advice. What's the best way for someone suffering from AD to help you recognize the condition and help get us the immediate treatment we need?