Brave Butterfly:
A Hypoparathyroidism Journey
— Bari Vapnek

“Your past does not decide your future.” — Anonymous proverb Last weekend was a fruitful one in terms of hope, resilience, learning, and love. I was grateful to attend an annual conference organized by the Hypoparathyroidism Association, where I had the opportunity to hear from expert doctors, researchers, and…

“No day shall erase you from the memory of time.” — Virgil Having hypoparathyroidism makes my life different from most people’s. It’s not easy to put into words all the feelings that come with this rare disorder, which affects so many parts of my life. Lately, I haven’t been…

“When you get into a tight place, and everything goes against you … never give up then, for that’s just the place and time that the tide’ll turn.” — Harriet Beecher Stowe It’s been 10 years since everything in my life changed. Many people with hypoparathyroidism say their…

“Slow down, you crazy child/ And take the phone off the hook and disappear for a while/ It’s all right, you can afford to lose a day or two/ When will you realize Vienna waits for you?” — Billy Joel, “Vienna” Living with hypoparathyroidism is unpredictable, like being on…

Having hypoparathyroidism means dealing with more than just low parathyroid hormone and calcium levels. Many patients have muscle cramps, tingling in their extremities, fatigue, muscle weakness, anxiety, and depression. These extra challenges make life difficult. After nearly 30 years of living with hypoparathyroidism, I developed stage 3 chronic…

Note: This column describes the author’s own experiences with Natpara (recombinant parathyroid hormone) and Yorvipath (palopegteriparatide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. “Red and white, blue suede shoes/ I’m Uncle Sam, how do you do?/ Give me five,…

 “What you have caught on film is captured forever. … It remembers little things, long after you have forgotten everything.” — Aaron Siskind While standing outdoors surrounded by nature, I watched the leaves move in the breeze and felt drawn to photograph golden petals in the sunlight. In that moment,…

“It’s like déjà vu all over again.” — Yogi Berra Getting on a plane recently brought back a rush of familiar feelings. I remembered 2019, when I took this same flight from Florida to New York City for my first clinical trial appointment. I felt like I was reliving the…

“Don’t let your circumstances define your future.” — Popular saying If I had one wish, it would be a world without hypoparathyroidism. Realistically, that is as unlikely as winning the lottery, but as the Grateful Dead said, “Without love in the dream, it will never come true.” On June…

“Patience is bitter, but its fruit is sweet.” — Popular proverb often attributed to Aristotle Because of hypoparathyroidism, my body struggles to keep my calcium levels stable, which can lead to a lot of anxiety. Waiting for test results fills me with dread. It’s like standing near…

Soft morning light spills through my windows as I power on my laptop. A gentle glow envelops the quiet room. I think about where I was a year ago, when hope felt uncertain and struggle was heavy. April marks the first anniversary of my column, “Brave Butterfly,” so I…