What’s in a name? How I clarify what ‘hypopara’ is — and isn’t
Hypoparathyroidism is too often mistaken for hypothyroidism
When I was in seventh grade, I held up a poster board with big, bold letters and proclaimed that my favorite cassette tape was “Jagged Little Pill” by “Atlantis Morrisonite.” I learned two important lessons that day. First, never trust the built-in spell-check. Second, the meaning of a word can be completely changed with just a few letters.
My favorite singer wasn’t, in fact, named after a mythical lost city and a semiprecious gemstone, but was Canadian singer-songwriter Alanis Morissette.
It’s funny that this memory came rushing back when I recently had to correct someone multiple times that I don’t have hypothyroidism (low levels of thyroid hormone), I have hypoparathyroidism (low levels of parathyroid hormone that lead to low calcium levels). I get it; it’s only four letters difference. Plus, the parathyroid glands sit behind the thyroid in the neck. They’re practically besties.
Add in that thyroid surgery can be a cause of hypoparathyroidism — leading to a double diagnosis — and it’s easy to see why the mistake happens. But what’s a frustrating error in conversation can be a serious issue in an emergency situation. Since my diagnosis in 2003, I’ve wished hypoparathyroidism had an alternate name. Something that wouldn’t trick exhausted medical staff into thinking I need thyroid hormone instead of calcium when I’m fighting off tetany, or serious muscle spasms caused by low calcium.
I can’t change the name of my rare disease — apparently I’m not famous enough to have a disease named after me — so I’ve tried to find other ways to share the differences.
Understanding ‘hypopara’
I always start with explaining what my disease is and isn’t. I find using the abbreviated name “hypopara” helps. “I have hypopara, which means I have to control my body’s need for calcium from the outside. I do not have any issues with my thyroid.”
This explanation of hypopara is rudimentary, but enough information to open a discussion.
On my medical alert bracelet, my health app, and my phone’s lock screen, I have “hypopara — calcium dependent.” By adding the phrase “calcium dependent,” I hope to signal the effect hypopara has on my body and what I may need, even if the person reading isn’t familiar with the disease name.
In my wallet, I have a medical card behind my license that defines hypopara. I also keep a printout about hypopara and a list of medications in the inner pocket of my purse. Whenever I’ve been taken to the hospital by ambulance, the first responders always open my purse, looking for medical information. Having this information readily available has directed the course of action when I’ve been unable to communicate clearly.
I’ve also started a hypopara blog on my author website that details what hypopara is and where I’m at on my journey. It’s been a great tool, both to answer frequently asked community questions and to share with doctors when I fill out new patient paperwork. When I arrive at my appointment, I ask the doctor if they’ve reviewed the website, and if not, I hand them a printout about hypopara. Then I ask them if they have any questions.
“What’s in a name?” Juliet asked in Shakespeare’s “Romeo and Juliet.” Turns out a lot! By taking control of how I share the name of my disease, I’ve been able to increase my success rate at communicating what hypopara means for me and my body.
Note: Hypoparathyroidism News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.
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