Support for Those Living with Adrenal Insufficiency

Preparing for emergencies

Preparing for Emergencies: If you are experiencing an emergency now STOP call 911 and take action immediately.

An adrenal crisis is life threatening and needs prompt treatment. If you think you or your loved one is experiencing crisis symptoms do not wait!  CALL 911. If you have an emergency injectable use it per your endocrinologist’s instructions, and get to the ER! Contact your endo to alert him/her so they can inform the ER staff of your imminent arrival.

Tips to prepare for an emergency:

Get an App for your smart phone:

AIU’s exciting new partnership with Backpack Health means that there is now an app for your phone that will soon have features specific to those with Adrenal Insufficiency. Download the app here.

Communicate with emergency providers and alert others to your condition. We have listed many of resources we offer in our store that you may find helpful.  Shop at the AIU Store

  • Fill out the mini-brochure and keep it in your wallet.
  • Put emergency/crisis cards in your wallet and give them to your friends and family.
  • Attach patches or ID covers to backpacks, car seats, or seat belts
  • Use a rescue facts seat belt cover.
  • Place a magnet on your refrigerator or a decal by the front door
  • Place a magnet on the car door next to the adrenal insufficient passenger
  • Use temporary tattoos as a supplement for a child’s ID while traveling (in case they lose it on a trip)

 

Always carry your injection kit with you.

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

All patients with adrenal insufficiency need an emergency injection kit. Anyone is at risk of a sudden accident or trauma. Shock or injury creates an immediate need for more cortisol. Without emergency treatment, death can occur in as little as 30 minutes. It’s important to create a crisis plan with your doctor. Be sure to read the National Institutes of Health (NIH) Managing Adrenal Insufficiency flyer. If your physician is reluctant to prescribe an injectable you can reference the flyer.

Your injection kit should contain

  • Emergency Instructions from your physician.
  • Two vials of Solu-cortef or other emergency steroid prescribed by your doctor. (in case one fails)
  • Syringes – Be sure to ask your physician to write a script for the syringe as well, but to be sure the pharmacist includes it. Be sure to get a syringe large enough to hold your emergency dose with a needle long enough to reach a muscle. Ask your physician to include the size and needle gauge on your prescription. Syringe size should be 3ml, 22 or 23 gauge, and 1′ to 1 1/2″ needle length. You will need a script for 2 vials and 4 syringes, in case of malfunction. If needles are separate from the syringe ask for two, sometimes the needle may bend when drawing up liquid and be harder to inject.
  • Injection instructions.
  • Many also include additional oral medication and anti nausea medicine to their kits.

 

Make an appointment to see the local ER manager.

Explain that your condition is not well known, and you’d like to have good communication on procedure if you need their services. Take brochures and literature about AI, and ask for them to be added to your file. Give them copies of the physician letter outlining your emergency care.

Visit your local EMS Station

It’s always a good idea to visit your local EMS station to let them know you are in their service area. We have some helpful tips and downloads you can use to get you started.

Get a medical ID

A medical ID is the first step in letting emergency providers know what to do when you can’t speak for yourself. 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 say they look for a necklace or bracelet type ID. Other types such shoe tags may not be seen.

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.

Parents start making your child wear 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

 

Ideas for your smart phone.

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.

 

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.

 


Being prepared can save your life!

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 CardPage. 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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