I’ve written about corporate accounting controversies and political parties that dodge and weave. I explained complex accounting gymnastics, antagonized regulators and chased publicly traded companies, and caused more than one person to frown when a light went on in their corner.
I have sought to use freedom of information laws to try to track down information and have found – like many others trying to wrest information from the clutches of the government using FoI – that things can be made difficult by people who want to hide.
There is one story, however, in which I was able to get a straight answer about the use of FoI laws in Australia that was particularly important to me, and one in which the FoI process was particularly helpful.
I was well past 40 and was unaware of the detective work that went on later to find out I had what is a rare condition. I didn’t know anything other than what my specialists told me during the periodic check-ups.
This changed when I requested access to my medical records at the end of 2018 at the Royal Children’s Hospital using the ability to access this material via FoI.
All it cost me to get back into the archives time machine, which happened just as Australians were debating whether to opt out of the My Health electronic system, was one hundred dollars which included the application fee and payment for printing and mailing. costs.
Information about the first 19 years of my life arrived in mid-January in a file from Manila in the mail, and I began my personal medical safari.
What did I learn?
It was about six weeks after birth that the disease was discovered after a battery of tests were undertaken to unravel this medical mystery that ran the gamut, including immunology and bacteriology.
I had been taken to the hospital by my parents with convulsions that had lasted longer, but there was no immediately discernible cause, so the doctors had to go through the process of ruling them out to try to understand the dilemma with which they were presented.
Hypoparathyroidism – basically the inactivity or non-existence of the parathyroid glands – leads to a range of symptoms which include tetany, fatigue, tingling around the face known as paresthesia and a range of other weird and wonderful if the condition is not treated properly with one of a range of treatments.
Seizures were one of the ways hypoparathyroidism manifested and the medical report of how slowly I recovered from it during my hospitalization as an infant fascinated me.
“The seizures that occurred early in his hospital stay were controlled with [intravenous] calcium gluconate – as his serum calcium increased, it was replaced with oral calcium gluconate. Also given vitamin D and pentavite,” the medical report in what is a 300-plus-page dossier chronicling almost two decades of my existence. “The seizures became less frequent until they finally ceased, and the patient was discharged on oral calcium gluconate, 1 Gm qid. vitamin D 1000 daily and Pentavite 12 drops daily.
This was the start of using what is called conventional therapy to treat the disorder which in my case has continued to work well. There are alternative hormone treatments, but in my case “if it ain’t broke, don’t touch it” applies. Why spoil the success?
I am different from some others with the disease because there are people who have hypoparathyroidism which could be related to another disorder such as a problem with the adrenal glands.
Others might find that the hypoparous is the door prize they receive when dealing with thyroid issues. The parathyroids sit on top of the thyroid gland, and as such, removing one thyroid gland to fix one medical problem can lead to the onset of another. There are also people for whom the disorder is familial.
There were also tests for other things, too, to rule things out over periods of time given the nature of the hypoparas, but these usually came back with the doctors’ version of “nothing to see here”.
My records also provided an audit trail of blood test results taken once every three months to ensure there was sufficient ‘control’, as doctors call it, of blood calcium levels. . There are times when things weren’t right, but short letters saying “you’ll be glad to hear your blood tests were fine again” are strewn throughout the files.
The contents of Manila’s big file reminds me of the care that nephrologists — doctors who specialize in treating kidney problems — gave me during those years when endocrinologists didn’t understand as well the impact of calcium in certain disorders.
Flipping through the recordings also allows a person to remember how they felt at a particular time and place. The records highlighted the challenges I faced in figuring out how to handle this thing that medical professionals didn’t understand. It must also be recognized that these records also show the toll that medical mysteries take on families who are faced with having to understand something rare, different and, at times, isolating.
Records like these provide needed closure and a sense of transparency about dealing with an ongoing disorder.
A look at the Twitter feeds of journalists and politicians showing redacted documents resulting from freedom of information requests indicates that our laws governing the disclosure of information may need to be scrutinized more closely.
The community deserves to have the same level of transparency and sense of closure that I received when my files were dropped into my mailbox that morning.
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