Misunderstood - Rare Disease

Everything I have told you about adrenal insufficiency is 100% true. It is backed my medical professionals throughout the world. Most causes for adrenal insufficiency are rare diseases and therefore very misunderstood, often even among those same medical professionals. This disconnect can cause confusion and problems getting life-saving care, especially for those who were recently diagnosed. So, what should someone do to ensure that they get the best care in the case of a medical crisis?

I am on the board of directors of Adrenal Insufficiency United. One of my responsibilities is the parent representative for the group and I help oversee the large forum of parents on Facebook, and help to moderate other groups too. One thing I have recently noticed more is that patients present in an emergency room and those in charge of their care there fail to acknowledge the seriousness of adrenal insufficiency.

As a reminder adrenal insufficiency, means that one's adrenal glands to not function properly (either because of damage to the adrenals or another endocrine hormone producing gland). This impedes the production of some life sustaining hormones. Those hormones can differ with different forms of adrenal insufficiency, but one consistency in the diagnosis is that adrenals cannot produce cortisol. Cortisol is your body's stress hormone. In a well person cortisol fluctuates when there is stress - good stress, bad stress, physical stress or emotional stress. When someone does not produce cortisol and they do not have enough synthetic "cortisol" (daily medication for adrenal insufficiency) in their system it can lead to an adrenal crisis. An adrenal crisis is a life threatening event if not treated effectively and urgently.

There are a few steps that I encourage people diagnosed or caring for someone who has adrenal insufficiency to take to help with care in the event of an emergency.

*First of all make sure to have an emergency injection and be instructed on how to use it.

*Check with Emergency Services in your area and see what their protocol is to treat adrenal insufficiency. This can vary from having no protocol at all and just transferring to an ER, to having the emergency injection on their vehicle and being able to inject it. It is important to understand the specifics of the EMS closest to you and how they respond. Some may not be able to inject self-carry medications - so if you have your injection on you and they don't have it on their rig they would not be able to do anything other than transport (and give iv fluids, etc...). Have a documented protocol in place.

*Talk to hospitals near you. Make sure that emergency room personnel are not only familiar with, but know how to treat your form of adrenal insufficiency. Have your information on file, if possible. If you are not being heard go higher up in the hospital - patient advocates are a great resource.

In general adrenal insufficiency is a manageable illness day to day. But it is best managed when you have plans in place to ensure that in the case of an emergency those who would respond know how to respond. Do not wait until you have an emergency to find out that they are not prepared. If you need help - you know where to find me!!