Celebrating 2 years on Yorvipath, my hypoparathyroidism treatment
Reflecting with gratitude on my journey so far
When I was a teenager, adults used to tell me time sped up every year. I scoffed in that way kids do when they don’t believe an adult, but I swear these days that time is nonsensical. This week marks my two-year anniversary on Yorvipath (palopegteriparatide), the first and only treatment approved by the U.S. Food and Drug Administration for hypoparathyroidism. It somehow feels like a lifetime ago and just last week.
Looking back over the last two years, I can’t believe all the incredible moments I’ve been able to have as I reached a level of stability I haven’t experienced in decades. While I’m still terrified of what the future holds and how long I’ll remain stable, I’m celebrating every win. It all starts with gratitude.
I was enrolled in the Yorvipath expanded access trial and became the first patient to transfer directly from the recalled and discontinued medication Natpara (recombinant parathyroid hormone) to Yorvipath, without a washout period. It was terrifying because there were no data on how this was going to work — I was the case study! But it went smoother than anticipated.
I’m so thankful for the clinical trial patients who went before me, like fellow Hypoparathyroidism News columnist Bari Vapnek, who was patient No. 1 in Yorvipath’s Phase 2 trial. Their data and experience helped me on my own journey.
A second chance at life
After I stabilized from the transition, my life opened up in ways I didn’t expect. I was able to walk a mile, something I hadn’t done in years. I could bake, type, and hold hardcover books in my hands to read without quickly succumbing to pain or a spasm. I could even spend time shopping in a store without needing days to recover.
Heather Novak, second from left, and friends Birdy, Nic, and Elliot attend a production of “Romeo + Juliet” at Circle in the Square Theatre on Broadway in New York City. (Courtesy of Moonrise Photography)
I began going on adventures with family and friends, including seeing five Broadway shows. I wrote a book and several short stories, helped take care of my grandma when she was in hospice, went to my first Pride parade, did multiple book signings, and made hundreds of new memories with people I loved. The best part about my journey so far has been shifting my focus to something that isn’t hypopara for long stretches of my day. While it’s still an ever-present fixture in my life, it’s a side character now. I have a life that includes hypopara but isn’t fully controlled by it anymore.
It doesn’t seem real that I get to have this, that I’m able to experience a second chance at life. Even though I’m still symptomatic — I’m writing this column wrapped in three heating pads and flat on my back, fighting a bad spasm and nerve inflammation — it still feels like I got a reprieve from a sword hanging over my head.
As I’ve previously discussed, writing books with disabled characters who get a happily ever after is a powerful thing. It’s something that gave me hope when I didn’t have any. That hope is what kept me making the calls and sending the emails and pushing to get into the clinical trial. It’s what led me to believe I could have a better life.
The reality of chronic illness is that I know this stability won’t last forever, something I talk about in therapy frequently. But this week, I’m going to celebrate me, my tenacity, my medical team’s hard work, and all the patients who joined the trial so our entire community could have hope.
Happy two-year anniversary to my first week on Yorvipath!
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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