Where it all began 48 years ago …

Journalism was a natural career choice for me because I have always liked piecing together puzzles, solving problems, knowing what makes people tick and also revealing things designed to hold powerful people to account.

I’ve written about corporate accounting controversies, political parties ducking and weaving, explained complex accounting gymnastics, upset regulators and chased listed companies and caused more than one person to get grumpy when a light was shone into their corner.

There is one story, however, that I have not been able to fully uncover until earlier this year, which is the story of how I was diagnosed with a rare condition called hypoparathyroidism.

I am well into my late forties and for all this time I have been unaware of what detective work went on to discover I had what is a rare disorder until I requested access to my medical records late last year from the Royal Children’s Hospital under Freedom of Information laws.

All it cost me to go back into the archival time machine, which occurred at the same time as Australians were wondering whether to opt our of the electronic My Health system, was one hundred dollars that included the application fee and the payment for printing and mailing costs.

The first 19 years of my life arrived mid-January in a manila folder in the mail and I began to go on my personal medical safari.

What did I learn?

It was about six weeks from birth that the condition was discovered after there was a battery of tests undertaken to unravel this medical mystery that covered the full gamut including immunology and bacteriology.

I had been taken to the hospital by my parents with convulsions that had been occurring over a longer period of time but there was no immediately discernible cause so the medical practitioners had to go through the process of elimination to try and understand the dilemma with which they were presented.

Hypoparathyroidism – essentially the inactivity of or non-existence of parathyroid glands – results in a range of symptoms that include tetany, fatigue, tingling around the face known as parasthesia and a range of other weird and wonderful things if the condition is not treated properly with one of a range of treatments.

Convulsions were one way in which hypoparathyroidism manifested itself and the medical report on how I slowly recovered from these during hospitalisation as an infant fascinated me.

“Convulsions that occurred during the early part of his hospital stay were controlled with [intravenous] calcium gluconate – as his serum calcium rose, changed to oral calcium gluconate. Also given vitamin D and Pentavite,” the medical report in what is a 300-plus page file that chronicles almost two decades of my existence. “Convulsions became less frequent until they finally ceased, and the patient was discharged on calcium gluconate orally, 1 Gm q.i.d.. vitamin D 1000 daily and Penatvite 12 drips daily.”

This was the beginning of the use of what is called the conventional treatment to treat the disorder in my case that has continued to work well. There are alternative treatments that are hormone-based but in my case ‘if it ain;’t broke, don’t touch it’ applies. Why mess with success?

I am different to some others with the condition because there are people who have hypoparathyroidism that might come bundled with another disorder such as a problem with adrenal glands. l

Others might discover hypopara is the door prize they receive when they deal with thyroid problems. The parathyroids sit on top of the thyroid gland and as such the removal a thyroid gland to fix one medical problem can bring the onset of another. There are also people for whom the disorder is familial.

There were also tests for other things, too, in order to rule things out over periods of time given the nature of hypopara but those typically came back with the medical practitioners’ version of ‘nothing to see here’.

My records also provided an audit trail of blood test results that were undertaken once every three months to ensure that there was sufficient ‘control’ as the doctors call it of the levels of calcium in the blood. There are times when things were out of kilter but short letters that said “you will be pleased to hear that your blood tests were again satisfactory” are peppered throughout the records.

The records are also a reminder of the care that nephrologists – doctors that specialise in treating kidney problems – took of me during those years when endocrinologists did not have as great an understanding on the impact of calcium in certain disorders.

I was fortunate to have gifted medical practitioners such as Dr David McCredie and Dr Harley Powell keep me in check medically. It goes without saying that I am eternally grateful for their various interventions that have made things easier for me later in life.

The records also underscore the challenges I faced in understanding how to deal with this thing that medical professionals did not understand. It must also be acknowledged that these records also show the toll medical mysteries take on families that are confronted with having to understand something that is rare, different and, at times, isolating.

What is the sum of all of this for someone with a rare disorder like hypopara?

Resilience, persistence and an enhanced capacity for empathy are the things that first come to mind –  possibly why I succumbed to the irresistible pull of journalism in the first place.

Tom Ravlic FIPA is an investigative journalist and the author of ‘Vulture City: how our bankers got rich on swindle’ (Wilkinson Publishing) due for release shortly.

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