This Fourth of July, I’m celebrating more than one kind of freedom

I'm grateful for hypopara treatments that give me greater independence

Written by Bari Vapnek |

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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, I’m still alive.” — “U.S. Blues” by the Grateful Dead

Across the United States, people celebrate Independence Day with fireworks, pool parties, barbecues, and even by watching Nathan’s Hot Dog Eating Contest. It’s a time to celebrate freedom with good food and fun.

This Fourth of July is America’s 250th birthday. Of the 53 I’ve celebrated, one memory stands out as my favorite.

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Starting anew

A woman wearing a Grateful Dead tank top stands in a stadium with her arms outstretched before a concert.

Bari Vapnek attends the Grateful Dead’s “Fare Thee Well” shows in 2015 at Soldier Field in Chicago. (Courtesy of Bari Vapnek)

In early July 2015, I started taking Natpara (recombinant parathyroid hormone), a hypoparathyroidism treatment that is no longer available. With this condition, my body can’t produce parathyroid hormone, leading to low calcium levels and serious symptoms such as muscle cramps and tingling.

That summer, during the Fourth of July weekend, I went to Chicago for the Grateful Dead’s final three performances, the last of their 50th-anniversary “Fare Thee Well” shows. For the first time since my diagnosis 18 years earlier, I felt normal and like myself again. For three nights, I sat under the stars at Soldier Field with thousands of other fans who loved the band as much as I did.

Those first Natpara injections changed everything. Colors looked brighter as I watched people, young and old, wearing tie-dye and celebrating together. This was life, and I was finally living it!

Thanks to Natpara, my calcium remained stable throughout the weekend. I didn’t need any supplements, and I didn’t have to worry about sudden drops in my levels. I experienced the sense of independence that everyone celebrates on July 4. I was free from the panic of a calcium crash — a freedom I treasure and wish had never ended.

At the end of the final show, the band played “Touch of Grey” as an encore. That was the song that sparked my love for the band and became my life’s anthem. Hearing it brought tears to my eyes. In that moment, it felt like life had come full circle. Thanks to Natpara, I could finally say, “I will get by/ … I will survive.”

I felt alive, happy, and, most of all, grateful. Spending three nights under psychedelic lights was a dream come true. I still get chills thinking about it. It’s a memory I’ll always treasure.

Back to square one

While taking Natpara, I felt truly healthy. I made the most of each day and lived the way I was meant to.

Sadly, I had to stop taking Natpara in 2017 due to reasons out of my control. I lost not only the life-changing medicine, but also freedom from taking so many pills, the security of stable calcium levels, and the feeling of being alive. As everything fell apart, I lost my spark. It felt like my diagnosis all over again.

It wasn’t until December 2019 that I started the clinical trial for TransCon parathyroid hormone, now known as Yorvipath (palopegteriparatide) since its approval by the U.S. Food and Drug Administration. During the trial, I felt the same sense of life I had experienced on Natpara. The medication gave me the chance to live again, and I’m grateful for that gift.

However, by the time the trial ended for me, I was taking 60 mcg/day, and the FDA-approved dose was only 30 mcg/day. My body did not respond well to the reduced dosage.

As I celebrate this Fourth of July, I’m marking 250 years of U.S. independence as well as a new chapter in my life. As I shared in a recent column, I’ve joined Ascendis Pharma’s PaTHway60 Phase 3 clinical trial to investigate the safety and efficacy of palopegteriparatide at doses greater than 30 mcg/day. I’m grateful for this second chance to contribute to science and hope it will allow me to celebrate greater independence from the chaos of hypoparathyroidism.


Note: Hypoparathyroidism News is a strictly 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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