Support for Those Living with Adrenal Insufficiency

Newly Diagnosed

Getting Diagnosed with Adrenal Insufficiency is scary, but you're never alone with AIUReceiving the diagnosis that you or a loved one has adrenal insufficiency can be overwhelming. Trying to learn about AI, absorb information from doctors, and cope with feelings of isolation from family and friends can leave you scared and lonely. 

There is no need to feel alone in this journey you have just begun. We all have so much to learn and give to each other. Although we are sorry for the circumstance that brought you to this place we want to welcome you to our AI Family.

Be sure to visit our Emergency Instructions page to learn what to do and how to prepare yourself in case of an adrenal crisis

In case of an adrenal crisis follow the instructions of your physician
  • Take the emergency medication prescribed by your physician.
  • Call your emergency services: e.g. 911, 000, etc. Tell them that you are experiencing an adrenal crisis and require a paramedic.
  • Unlock your front door in case you fall unconscious or are unable to open the door for paramedics.

 

ASK YOUR DOCTOR

Report any changes in your health to your doctor and let them know if you are not doing well on your medication. They won’t be able to help you if they are unaware you are struggling.

Do not use social media or the internet as your physician. Instead, use these platforms to learn and gain support so you can be discussing your treatment plan with your physician.

Ask about stress dosing: when experiencing an illness, injury, surgery, and for some, extreme emotional stress, extra medication is needed. NIH has SickDay guidelines be sure to go over these with your doctor as each person is different.

Ask for an emergency letter to show emergency medical personnel that describes YOUR condition and medications. This is especially important for Secondary AI patients who may present differently in times of crisis.

Make sure you’ve been instructed on stress dosing and how to handle emergencies. Ask for training on how to inject Solu-Cortef® and get a prescription filled for it. It’s best to have more than one vial on hand. Keep one at work, at school, with each parent, etc.      

Many patients with adrenal insufficiency (lack of cortisol) also lack Aldosterone. This is often called SALT WASTING. For those affected hot weather and exercise can contribute to dehydration and it is important to replace your fluids and electrolytes. Discuss your particular electrolyte needs with your doctor to supplement appropriately. Not everyone needs these replacements.                                                         

TAKE RESPONSIBILITY

Buy an emergency identification bracelet. Suggested engraving, “Adrenal Insufficient, Steroid Dependent.” Also list any other important health conditions e.g. diabetes or asthma. If there is room on your bracelet consider including “emergency injection in purse” etc.

Always take your prescribed medication on time as scheduled by your doctor. Don’t skip doses and if you do forget your dose, take it when you remember and continue with the rest of your doses. It can be helpful to set alarms on your mobile phone to remind you of your doses, and to set a 5-minute snooze alarm in case you were distracted at the time of the first alarm.

One of your best tools when living with a rare disease is self-education. Learning about adrenal insufficiency will enable you to become a partner in your own or your loved ones treatment. Since adrenal insufficiency can be caused by so many different conditions, many of them rare, some doctors may not have many patients like you.

Approach exercise within your ability and limitations. Watch the presentation on “Stress dosing for illness and injury” and “Approaching fitness and athletics on our Conference Recordings Page. As always be sure to discuss any concerns with your doctor.

TIPS FOR EMERGENCIES

Always keep an extra supply of your steroids with you and make sure your doctors gives you a prescription for Solu Cortef® 100mg Act-o-Vial for emergency injection. You will need to obtain syringes and needles suitable for IM injection. Our emergency page has more information and instructional videos.

Watch instructional videos on how and when to inject the Solu Cortef emergency injection. It is recommended to use your emergency injection as directed by your physician. In this video Professor Wass explains how having the injection won’t harm you and it may well save your life.

Helpful links

Circadian Rhythm brochure from Prof. Peter Hindmarsh and Kathy Geertsma of cahisus, London, UK.  There’s also a very helpful book by the same authors. Congenital Adrenal Hyperplasia: A Comprehensive Guide

Surgical Guidelines UK, Addison’s Disease Self-help Group, ADSHG:

Surgical guidelines U.S. National Adrenal Diseases Foundation, NADF:

4am Dosing for Illness:

AIU/AIC Steroid Tapering Guide

Experts at Children’s of Alabama provide information on Cortisol: what it is and how to help your child when there is a deficiency. Learn all about it in this 12-min video.

We hope that you will join some of our support groups.  Our main support groups is Adrenal Insufficiency Support  Contact us on our Facebook page or email us at contact@aiunited.org.

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