Last night, I had to sit back and wait, helpless, while a fellow AI warrior slipped into adrenal crisis.
You see, I help moderate an online support group for people with adrenal insufficiency. Someone reached out to us for help, but we didn’t know where they were, how to reach them. Their online profile was locked down tightly, for security, and there was no way to know if this person survived the night.
**As I’m writing this, a friend of this person reached out to let me know that this person lived through the night… And I’ve burst into tears!**
On another group, a member frantically asked what they needed to do because they were afraid a crisis was imminent. They didn’t have a doctor to reach out to late at night, and didn’t know if their fear was warranted or not. They are new to this diagnosis.
Today, another person reached out for help. This person didn’t know how to utilize their emergency injection. The solu-cortef act-o-vial was cumbersome and confusing. Another moderator was able to reach them by phone, and talk them through it while they called for an ambulance.
Another person lost their life last week due to an adrenal crisis in their sleep.
Far too many doctors see a patient with adrenal insufficiency and assume that taking a little steroid pill twice a day will allow someone to live a regular and full life. That is simply not the case. The human body produces cortisol on demand, and the needs shift based on activity, stress, injury, and illness. These are regular daily variables that cannot be planned for. Anticipating a stressful situation isn’t something healthy people even consider.
For an AI patient, though, we MUST anticipate every potential scenario.
It’s flu season, so we carry extra hand sanitizer, wear masks, and get our flu shots.
Walking around the block on a hot day, we must bring water with electrolytes as well as a cell phone and our emergency injection.
Grocery shopping can often cause enough stress that a stress dose is necessary.
These variables are not considered by most doctors. They don’t understand how individual the cortisol response is.
The best way to educate medical professionals about the variability of adrenal insufficiency is to raise awareness.
Speak to your providers about your experiences, and don’t be afraid to advocate for yourself. If your medication regimen isn’t working, speak up.
Remember, EVERY adrenal insufficiency patient MUST have an emergency injection on hand – and a back up!
Take the time to educate yourself about the risks. Whether you are a patient, friend, or caregiver, if you are around adrenal insufficiency, it may fall on you one day to save a life!