A brush with mortality: Life with the rare Addison’s disease

While not common, Addison’s disease can be debilitating and lead to life-threatening emergencies. But managed well, it’s also possible to live a happy, healthy life.

Never heard of Addison’s disease?

Perhaps it’s no surprise, given the condition, also known as primary adrenal insufficiency, affects only about one in 10,000 people.

“It occurs when the adrenal glands stop producing cortisol and often aldosterone,” deputy director of Royal Adelaide Hospital’s Endocrine and Metabolic Unit, Professor David Torpy, says.

Symptoms of Addison’s disease include extreme fatigue, low blood pressure, fainting, weight loss, salt cravings, skin darkening, irritability and depression.

There’s also the ongoing threat of an “adrenal crisis”, which can be potentially life-threatening if not treated rapidly.

Addison’s disease is an example of the illnesses observed on Rare Disease Day, which aims to raise awareness and improve treatment and medical representation for individuals experiencing uncommon conditions.

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What causes Addison’s disease and how is it treated?

Addison’s disease can affect people of all ages, and is most commonly caused by autoimmune disease.

But sometimes surgery, cancer, tuberculosis, injury or bleeding, a fungal infection, or genetics can also lead to the condition.

Professor Torpy says until hormone replacement therapy was developed in the 1950s, Addison’s disease was usually fatal.

Although still often difficult to diagnose, he says treatment today is “very simple, inexpensive and lifesaving”.

“In many ways it’s a triumph of modern medicine and chemistry,” he says.

He says while some people report never quite feeling the same after contracting the condition, the majority happily get their energy levels back.

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Living with Addison’s disease – Bronwyn’s story

Bronwyn Monro, 74, has been “living well” with Addison’s disease for more than 30 years, but initially had a hard time getting a diagnosis.

“I was getting sicker and sicker,” Bronwyn, who is now president of the Australian Addison’s Disease Association.

“I have four children and I worked as a teacher, and I was just getting less able to have a day at school and craving salt.”

“I would stop on the way home and buy a packet of salted crisps, and then come home and suck on salted lemon.”

She also had terrible fatigue, and often felt dizzy in the mornings and unable to eat.

Initially, her GP told her to go home and go to bed for a week.

“And in that week, I had the (adrenal) crisis, and I could have died,” she says.

Finally, after seeing four doctors, Bronwyn was diagnosed with Addison’s disease, and wound up taking an entire term off school to recover.

Bronwyn now visits her endocrinologist every six months, has regular blood tests and wears a medical bracelet.

If she experiences an adrenal crisis, she gives herself an emergency hydrocortisone injection at home, or rushes to the nearest hospital with an emergency kit that informs medical staff and hopefully speeds her way to getting a drip.

Written by Larissa Ham.