My Life With Adrenal Insufficiency

Why Parents Need to be Aware of Adrenal Insufficiency and Adrenal Crisis

Adrenal insufficiency

Why Parents need to be aware of Adrenal Insufficiency and Adrenal Crisis.

It’s been almost three years since I collapsed and went into Adrenal crisis for the first time. I’d been feeling unwell for a number of months and had repeat visits to the doctors only to be told I had chronic fatigue, fibromyalgia and anxiety.This was far from the truth, I actually had Adrenal Insufficiency a life threatening illness where my body fails to produce enough Cortisol “the stress hormone” to function properly.

Without Cortisol the body suffers symptoms of being adrenally low and then goes into crisis, coma and eventually death. 

Adrenal insufficiency

After diagnosis I was given hydrocortisone, a steroid medication which I have to take 3 times a day for the rest of my life. I also received an emergency injection kit incase I am under sudden stress. For example, if I am in a car crash, begin vomiting or if I was given shocking news such as the death of a loved one. All these things could drain the Cortisol from my body in an instant and cause me to head downhill.

I’ve read a lot about Adrenal Crisis and experienced this many times in the past three years. My daughter stood on a nail and although I stayed emotionally calm and we travelled to the emergency department without a problem, my body could not take it and I collapsed at the reception desk of the A and E. 

When someone goes into adrenal crisis there are certain symptoms and without emergency hydrocortisone via injection or IV a patient with Adrenal Insufficiency can within 3 hours die. 

For me it starts with feeling dizzy, stabbing pains in my legs and chest. Feeling headachy, then comes the runs followed by vomiting, a sudden drop in blood pressure, weakness and collapse. This is when my husband has to give me an injection and get me to the hospital.

It’s not exactly the same for all people with Adrenal Insufficiency. You can go into sudden shock but sometimes for example if you have a virus or hidden infection or something draining your cortisol levels, you may go downhill more slowly over a few days. 

I’ve headed into adrenal crisis both slowly and quickly. When it happens my husband needs to monitor me and help me work out how I feel. It’s really hard as I lose all ability to concentrate and focus. 

This brings me to the issue of parents who have children with Adrenal Insufficiency. It must be a lot harder to recognise the early symptoms of being low in cortisol in an infant or child than an adult. It must also be very worrying sending your child out into society knowing there is a chance they could have an adrenal crisis. 

Some children with Adrenal Insufficiency are lucky to lead normal lives but many and some I know suffer day in and day out. They cannot go to school and parents are worried constantly trying to work out whether of not their child is well, needs to stress dose or have an emergency injection.

And then there are children and adults who die, because they have not yet been diagnosed with Adrenal Insufficiency. For example Ryan Morse who died in 2012 after becoming really unwell. Doctors failed to visit Ryan, diagnose the condition or ring an ambulance. The manslaughter case is being held as we speak and has been covered on ITV news.

Ryan was only 12 years old when he passed away from Addison’s Disease which is also known as primary Adrenal Insufficiency. Sadly Ryan is not the only one. I have a number of friends who have died from the illness and know of others who have been misdiagnosed or not diagnosed at all until it is too late. 

It’s not good enough. Adrenal Insufficiency is rare and it is uncommon. Many medics I have come across have not known how to treat me in emergencies and it can be very scary. I believe more needs to be done to educate medical staff and the general public, to raise awareness of a condition which if left undiagnosed will kill more innocent children, adults and parents.

This is a serious condition and with knowledge and understanding of Adrenal Insufficiency and Addison’s Disease lives can be saved. I hope this helps inform others especially parents who may need to know about the condition because children have Adrenal Insufficiency too.

To learn more about the Signs and Symptoms of Adrenal Insufficiency please read:

Adrenal Crisis

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