If you’re living with classic congenital adrenal hyperplasia (CAH) or parenting a child with this hormonal condition, a doctor may have warned you about potential medical emergencies. Known as an adrenal crisis, this potentially life-threatening complication of classic CAH can happen when the body can’t make enough cortisol.

Being prepared for an adrenal crisis and knowing the steps you need to take could save your or your child’s life. Here’s what you need to know to keep yourself or your family member safe if an adrenal crisis occurs.

Preparing for a CAH Emergency

There are a number of steps you can take before an emergency so you’re ready if or when it occurs. Consider making these steps a priority, as they could save you time during a crisis.

Know the Signs of an Adrenal Crisis

If you know what an adrenal crisis looks like, there’s a better chance that you’ll be able to get emergency help for yourself or your child if one happens. Educate people around you about the medical condition so they know to look out for signs of an adrenal crisis:

• Drowsiness
• Confusion
• A drop in blood pressure
• Sudden, significant weakness
• Vomiting

Make sure the people around you know that you or your child may need help if a crisis occurs.

Have Emergency Instructions Accessible

Fill out an emergency instruction sheet, then keep it where people will be able to find it in an emergency. If your child goes to a child care program or school, make sure the institution has a copy of this sheet on file. You should also make sure that personnel at the center or school understand what can happen and what needs to be done if your child has an adrenal crisis.

If you’re an adult, carry your instruction sheet with you. The people closest to you should know where it is and how to access it at all times, in case you can’t communicate. If you’re comfortable doing so, give a copy to a coworker or to others you spend a lot of time with.

Notify Local Emergency Workers of Your Diagnosis

CAH is rare, so some emergency workers, like firefighters or emergency medical technicians (EMTs), may not recognize an adrenal crisis right away or know what to do. It can help to visit your local firehouse before there’s an emergency.

Explaining what CAH is, what an adrenal crisis is, and what kind of care it requires can help first responders know how to save your or your child’s life later. You can also leave a copy of your emergency instructions so that others who work there will have access to it.

Wear Medical Alert Jewelry

Medical alert jewelry can be an easy way to let first responders know your CAH diagnosis so you can get proper treatment in an emergency. You can find medical alert bracelets or necklaces that are attractive, then have them engraved with the information medical staff would need in an emergency.

For active kids, a shoe tag or a bag tag with all of the relevant information might help but shouldn’t replace a medical alert bracelet.

There are also downloadable cards you can carry that are available in a number of languages, so you can always get the help you need wherever you are.

Make Sure Your Stress Dose Is Easy To Find

A stress dose is an extra dose of hydrocortisone that you or your child can take when your body needs extra for any reason, including stressors like illness or trauma. Your or your child’s doctor will make sure you have an emergency injection kit for an adrenal crisis.

Keeping this medication accessible and easy to find and telling people where it is and how to use it will help you be prepared in case there’s an emergency.

You may also want to carry emergency injection instructions with you, just in case a stranger needs to give a stress dose. Having a safe way to dispose of syringes can also help, though it’s not absolutely necessary.

First Steps During a CAH Emergency

In case of an adrenal crisis, these are the steps caregivers or first responders should take. Taking them can help you stay healthy and avoid life-threatening complications.

• 1

  Give the Stress Dose
  If you have your stress dose ready to go, administer it right away. As soon as you realize that you or your child is having an adrenal crisis, give that medication. If you need assistance giving yourself a stress dose, get someone nearby to help.

• 2

  Get Emergency Medical Care Fast
  You or your child will need emergency medical care beyond the stress dose. Once it’s given, get to a hospital quickly. You can call for an ambulance or find the fastest way possible to get to an emergency room. If you’re the one having the crisis, don’t drive yourself, since that can be dangerous.

• 3

  Tell Emergency Medical Staff About CAH
  Be ready to communicate about CAH to first responders and the medical professionals at the emergency room. If you have emergency instructions on you, make sure they get them and understand that they must follow them carefully. You may have to explain CAH and what an adrenal crisis is. Let them know you already had a stress dose and explain what has helped for previous adrenal crises.

• 4

  Contact Your Endocrinologist
  Once you or your child is stable, reach out to the endocrinologist who leads your care team. If it’s nighttime or the weekend, you may need to ask for the on-call member of your endocrinology team. It’s important that your care team knows what happened as soon as possible, as they may have additional instructions for you or hospital staff.

Follow Up With Your CAH Care Team

When the emergency is over, follow up with your or your child’s endocrinology team. Your needs surrounding CAH can change as time goes by, so your treatment plan will also need to be updated.

An adrenal insufficiency crisis may indicate that CAH isn’t well-controlled with current medications. Your endocrinologist is the best person to help you evaluate your needs and recommend any changes to your treatment plan.

Your endocrinology team can also help you evaluate your emergency plan and strategy. They may suggest changes if you’re concerned about getting the care you need in a crisis.

Join the Conversation

On CAHteam, people share their experiences with congenital adrenal hyperplasia, get advice, and find support from others who understand.

What else is helpful to have or do in case of a CAH emergency? Let others know in the comments below.