My Life With Adrenal Insufficiency

Adrenal Insufficiency Awareness

lack of awareness

Adrenal Insufficiency

It’s no Joke, Adrenal Insufficiency is the rare condition across the world and with rare illness there is often a lack of awareness and understanding.

I’ve been writing about Adrenal Insufficiency for over 10 months now. I feel I’ve done a really great job raising awareness about my illness, Sharing experiences and stories and helping people to see how life-threatening adrenal insufficiency can be.

I’ve had many comments across social media. Some are from those unfortunate enough to have my condition. Many comments however have been from people who had never heard of adrenal insufficiency before coming across my blog. I’ve worked really hard to write and share my understanding of adrenal insufficiency with the world.

I’m no doctor but I am a human being experiencing an illness which many doctors, (the ones I have come across) and almost every ambulance officer (that I’ve come across) have not really known how to treat. When having an adrenal crisis, my husband has had to explain and tell ambulance officers what to do. They’re always full of questions, saying that they have never come across AI before and it’s not something they are familiar with. As scary as the sounds, I’m grateful to have educated quite a lot of ambulance staff everything in the past two years.

The problem of adrenal insufficiency being unfamiliar to medical staff it is not limited to the ambulance service. Many times when I have been in the accident and emergency department, I have been asked what other doctors usually do in the situation and doctors have followed my advice. It shouldn’t be this way but it is. It’s not something all medical staff see.

Despite all my efforts to share about my illness, my need for cortisol replacement therapy and the importance of double dosing went unwell with illness or infection, there are still many people you do not understand the life-threatening nature of adrenal insufficiency.

Today I received a message telling me that I should not be complaining when my receptionist does not feel having an infection requires an urgent doctors appointment. In fact I was told that an infection is never urgent no matter what condition the patient has.

Well, sadly that person is uneducated and clearly not trained in medicine. Infections can kill people and if someone with adrenal insufficiency does not double up on medication, they could have an adrenal crisis and die.

When the body does not produce cortisol, “the stress hormone”, then steroid replacement therapy is required. If the body is under added stress due to an infection, then more cortisol medication is required.

I have been told by an Endocrinologist that when I have an infection I need treatment as soon as possible. I cant wait for an available appointment in 3 weeks time.

So, to the man who thinks he knows everything and thinks I’m being petty, I encourage you to actually read up on my illness, Adrenal Insufficiency and instead of wasting your time telling me that I don’t need urgent treatment, do something more useful with your time.

Gee, you could even help to spread the word about this illness and share a post or two on the condition.

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Some Posts You Might Like to Share on Social Media

My adrenal crisis and the truth about how I feel 

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Why the Adrenal Pump is a brilliant treatment for Adrenal Insufficiency 

From Cancer to Adrenal Insufficiency – A Brave Story

 My First Magazine Appearance and the fight to Kick Adrenal Insufficiency in the Butt! 

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11 Comments

  1. I have been in the emergency room and also had to explain to the nurses and doctors what I have and what I need. I have been lucky that they always listen to me, but I fear a time when they won’t listen.
    mo

  2. That’s a really scary thought. As humans we take for granted that emergency staff will know what they’re doing with any patient in an emergency situation. I’m seeing my endocrinologist next week and you’ve given me an idea for something else to talk about as I’m only newly diagnosed with Addison’s I’m thinking I should better educate myself about what to do just in case. Awareness of this illness is very important to me too. I’m impressed with your level of knowledge has it just come from personal experience? I think of learnt more form you than any other website

  3. I have the same problem getting an appointment with my Doctor…at least a month wait. What doesn’t seem to be understood is that things that used to not be a big deal for my body in the past are now very difficult for it to handle. The typical “wait and see” that most doctors use can be deadly.

    1. It can be really tough and difficult and yes the “wait and see” takes many months of our lives and is not fun when sick. SOmetimes I wish those not facing chronic illness could understand that!

      1. Hi my mum has just died due to pneumonia however since being diagnosed with adrenal I sufficiency in April I too have had a battle on my hands to raise awareness
        For her sake and get health professionals to treat her condition seriously . I am a nurse and knew nothing of the condition until mum was diagnosed and I educated myself . Gail

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