Support for Those Living with Adrenal Insufficiency

Emergency Instructions

     911

An adrenal crisis is life threatening and needs prompt treatment. If you think you or your loved one is experiencing crisis symptoms do not delay!  CALL 911

Some of the more common symptoms of adrenal crisis are listed below.  Download the signs/symptoms chart or go to “What is an adrenal crisis” to see more.

  • Purchase your Adrenal Insufficiency Kit at AIU's Store

    Get your emergency kit at AIU’s store.

    severe vomiting

  • diarrhea
  • headache/dizziness
  • lethargy/listlessness
  • neurological deficits/confusion
  • stomach/leg pain
  • pale skin/shivering
  • seizures

If you have an emergency injectable use it per your endocrinologist’s instructions, and get to the ER! Call your endo to alert him/her so they can inform the ER staff of your imminent arrival.

EMERGENCY LETTERS! BE SURE TO KEEP ONE WITH YOU AT ALL TIMES.

Emergency Letter: A letter to take to the emergency room with you written for AIU by Professor Peter Hindmarsh.

Emergency Letter: A letter to take the the emergency room written by the Pediatric Endocrine Society Board of Directors, November 2015.

Emergency Letters Translated into several languages thanks to the Addison’s Disease Self-Help Group. Languages available: Cantonese, French, German, Greek, Italian, Mandarin, Portuguese, Russian, Spanish, and Thai.

Adrenal Crisis Pathway:  This graphic flowchart illustrates the events that can occur during an adrenal crisis.  These events can happen in 30 minutes or less.  Factors such as the overall health of the individual, mechanism of injury, and severity of illness all play a part. Sometime a crisis can take longer to develop.  It’s important to have a conversation with your physician about what to do in an emergency situation.

Learn to Identify the symptoms of an Adrenal Crisis

click to enlarge

Signs and Symptoms of Adrenal Crisis:  This is a poster of some of the common signs/symptoms associated with adrenal crisis.  Keep in mind this is not meant to be a representation of all of them, you could be experiencing a crisis even if you are not experiencing the signs/symptoms listed on this document.

Illness Flow Chart:  This helpful chart created by Professor Hindmarsh can help parents with children who are ill but is not meant to be used as a diagnostic tool. Parents unsure of what to do during a child’s illness should always contact a physician.

Injection Instructions Video:  This youtube video by the Succeed Clinic in OK walks you through the steps to inject.  Although the video was made for those with Congenital Adrenal Hyperplasia the instructions on how to inject are the same for anyone.  Be sure to ask your physician about the circumstances in which you would need an injection.

Written Injection Instructions :  These instructions are from Sydney Children’s Hospital other instructions can be found with google searches.

 

Tips to prepare for an emergency:

Make sure you have the Solu-Cortef Prescribed by your Physician Make sure you have the Act-0-Vial Prescribed by your Physician

 

Carry your injection kit with you. Make sure you have Solu-Cortef® in the act-0-vial, or other emergency injection prescribed by your physician.

 

 

 

Get a medical ID.

 

The top line of your Medical ID should read:  ADRENAL INSUFFICIENCY: STEROID DEPENDENT  Other helpful information to add to a medical ID includes: the endocrinologist’s emergency or on call number, patient’s date of birth, and emergency contact numbers.  The specific condition causing your AI may be added as well, but do not put this first as many EMTs will not know what it is.  When they are trained it’s to treat adrenal insufficiency.

MedicAlert and Road ID are two of the most popular sites. Both offer extra services that include a toll free number for Emergency staff to call. To choose those options look for an interactive ID from Road ID or My MedicAlert Services with MedicAlert.

Wear your Medical ID at all times. Make sure it looks like a medical ID! EMTs report that IDs that look like more like jewelry aren’t noticed. EMTs also report that they look for a necklace or bracelet type ID. Other types such shoe tags may not be seen.

Parents, start making your child wears an ID as soon as soon they are diagnosed or when they are big enough for one to fit.

Tattoos, even if they are on the wrist, are not guaranteed to be noticed by EMTs. It’s about 50/50 from those asked. This may change in the future as medical tattoos become more popular. 

Put Emergency Information on Screensaver, including contact phone numbers and Endocrinologist

 

There are many apps for smart phones now that will allow you to:

Make a screen saver for your phone.

Create a contact on your phone called ICE: In Case of     Emergency.  Put your emergency information down including contact phone numbers for family and endocrinologist.

iPhone app  Android app  Windows app

 

 

 

Basically do everything you can to identify yourself or your loved one as adrenal insufficient.  AIU has many items in our STORE to help and are always looking for additional ideas for products we can create to help.

Other ideas include:

  • Attaching patches or ID covers to backpacks, car seats, or seat belts
  • Applying a car decal or cling
  • Placing a magnet on your refrigerator or a decal by the front door
  • Placing a magnet on the car door next to the adrenal insufficient passenger
  • Using temporary tattoos as a supplement for a child’s ID while traveling (in case they loose it on a trip)

The following preparation guidelines were created for the MAGIC Foundation by Mitchell E. Geffner, MD (CHLA) and Dorothy Shulman, MD (USF Health Morsani College of Medicine). Although these documents are for parents of children with Congenital Adrenal Hyperplasia or Panhypopituitarism the advice would be good for anyone with adrenal insufficiency.


Stories about Medical IDs and ScreenSaver apps that have saved lives!

Medical ID “As you know I haven’t been feeling well for quite a while and had been updosing for little over a week. Little did I know i was headed for a crisis. I called 911 and promptly became unconscious afterwards. The ambulance arrived and I was rushed to the hospital. Upon regaining consciousness in the ER I didn’t know where I was. I had two IVs one in each arm. I noticed the call button and pushed it the nurse quickly responded she said “if it wasn’t for your bracelet we wouldn’t have know what was wrong.” I will never take off my RoadID. It should go to show how important carrying ID is important for our condition. If you don’t have an ID get one fast I cannot stress the importance of wearing one more than to say it saved my life.” Ryan

ScreenSaver app  “I was in a small car accident this afternoon. Once I got out of the car to exchange insurance details, I lasted all of 45 seconds. I tried to ring my boyfriend and my voice was so shaken I got out the words car accident and then collapsed. Out COLD on the gravel ground and I don’t remember nearly an hour of the missing time that followed.

But… you know what? I’m here to tell the tale… Why?
Because one of the bystanders saw my medical alert bracelet and called 999, meanwhile (so I’m told) another bystander grabbed my constantly ringing iPhone (boyfriend likely ringing back) and saw the special “lock screen” logo that one of our Addison’s Disease Support Group members made and the clear instructions led the woman to all of my pertinent details. Namely… If found unconscious I need an injection of HC, injection kit is stored in my handbag.  Apparently she jumped right in, followed the colour photo instructions to mix the 2 vials of water and Solucortef, did the business and injected me without hesitation… but it was still 40 minutes until I was talking and fully conscious.
The emergency consultant admitted its a stress induced Addison’s Crisis. He also admitted, the woman who injected me may well have saved my life.  Reminder to us all – be prepared and never leave home without your emergency kit.” Nichole

To learn more about Emergency Protocols for adrenal insufficiency visit our State Report Card Page. To learn about protocols for all rare disease visit RareEmergency.Info

We have a problem.

250,000 Americans are diagnosed with adrenal insufficiency. 6,000,000 more are considered to be adrenal insufficient yet remain undiagnosed.

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