In life with hypoparathyroidism, one size does not fit all
This rare disease affects a diverse community, requiring tailored care
“No two paths are the same, just as no two people are the same.” — writer Cait Flanders
My motto — “Everything happens the way it should” — expresses an acceptance that sometimes things occur beyond our control. It’s similar to the Alcoholics Anonymous philosophy of accepting things we cannot change. I can’t change the past, but I can keep moving forward.
During the COVID-19 pandemic, in the middle of a difficult divorce, I felt truly alive while participating in a phase 2 clinical trial for what is now Yorvipath (palopegteriparatide). The world had shut down, and I spent my days at the pool reading. I was immunocompromised, and being outside, away from others, was good for my health. I became a tanned homebody.
Around that time, a woman moved in next door. I saw her at the pool daily, and we immediately became close friends. She opened a women’s clothing boutique and asked if I wanted to help a few hours a week. I hadn’t had a job since I was diagnosed with hypoparathyroidism in 1998. But this woman, Liza Maskil, knew about the state of my health and that I was battling this rare disease. I took the job, and she’s been both generous and flexible.
I love getting dressed to start my day, putting on makeup, and heading out of the house. I feel at home in the store, which caters to customers of all ages and sizes. I work 15 hours a week and would like to do more, but it’s hard because of my full-time job as a hypopara patient. I’m at a lab or a doctor’s office three days a week, which makes it nearly impossible to add more hours at the store.
Reflecting on life with hypopara
We sell fabulous designer dresses at the store. These particular dresses are called one-size-fits-all, so when someone asks about sizing, I always reply, “One size fits most.” Of course, no two people are the same, so a dress might look better on one person than it does on another.
Liza Maskil, left, and Bari Vapnek take a break from tending to clients in the boutique clothing store where they work in Delray Beach, Florida. (Courtesy of Bari Vapnek)
Yesterday, as I repeated that reply, I thought about the similarities to hypoparathyroidism. We patients share similar experiences, symptoms, and treatment. However, hypoparathyroidism affects a diverse community, requiring tailored care. This diversity makes us unique, and it’s a reminder that a one-size-fits-all approach doesn’t benefit all hypoparathyroidism warriors. We’re a community, each with our own unique journey, but all walking the same path.
Some patients do well with the current standard of care. Some respond well to low doses of calcium, while others require higher doses. Everyone is different. Thankfully, it’s a promising time in the landscape of hypopara, as potential new treatments appear on the horizon.
But a treatment that works wonderfully for one person might not be as effective for another.
For those new to parathyroid hormone therapy, any option can be transformative. We’re not the same, so the fact that one person might be doing well with treatment doesn’t necessarily mean you’ll follow suit. You know your body best. This journey is yours, and the power to choose the best treatment for you is in your hands, just as clothing choices are in the hands of the shoppers in our store.
I dress different women knowing there’s a perfect dress for everyone. It’s just that not everyone looks great in the same dress. Hypopara isn’t a one-size-fits-all disease, and I believe that hypopara patients will one day have more choices for treatment.
This brave butterfly will continue spreading her wings as we find the treatment that makes us feel alive. We may not be one size, but we’re a strong community, and the changing landscape of hypopara brings hope to us for the future.
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.
About the Author
Heather Novak
Loved this column! "This journey is yours, and the power to choose the best treatment for you is in your hands, just as clothing choices are in the hands of the shoppers in our store." What a powerful line.