What hypoparathyroidism taught me about chasing my dreams

I recently shared that I wrote a book for my late grandma while she was in hospice. She was able to read it before she passed, and she cheered me on when I took advantage of a publishing opportunity. I’m thrilled to announce that the opportunity worked out, and I officially have one of my dream literary agents! Unexpectedly, I have my rare disease, hypoparathyroidism, to thank for it.

Before writing the book for my grandma, I hadn’t finished anything in three years. In 2019, my world was upended when the medication Natpara (recombinant parathyroid hormone) was recalled in the U.S. While I was lucky enough to continue receiving it through a special use program created by Takeda Pharmaceuticals and the U.S. Food and Drug Administration (FDA), everything changed when, three years later, Takeda announced its intention of discontinuing it in late 2024. The news wrecked me so badly that I barely made it through my last publishing contract, finishing the book just hours before my deadline a few weeks later.

I spent the next few years of my life focused on joining the Yorvipath (palopegteriparatide) expanded-access trial, moderating a social media group to help others navigate the program, and visiting loved ones. I began writing multiple books but was too scared to commit to one because I feared the FDA might not approve Yorvipath. What was the point of writing a new book if I was just going to lose everything again?

Even after the FDA approved Yorvipath in 2024, I worried about another recall, an insurance issue, or one day no longer being able to tolerate the medication. But, as always, my grandma knew exactly how to push me when she asked for one last book.

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This time when I wrote, I didn’t let fear win — I didn’t have time. I just wrote from the heart (well, my heart and a thorough outline). I couldn’t worry about the future when I had to focus entirely on the present.

A few days before my scheduled call with the agent to talk about representation, I confessed to my therapist that I was terrified of my dreams coming true. Despite extensive therapy, including both cognitive behavioral therapy and eye movement desensitization and reprocessing therapy (best known as EMDR), to help with my medical trauma, the recall memories lingered.

What happened if I reached for my dreams and everything fell down around me again? What happened if I got to live my dreams only to lose my health and stability?

As one can imagine, my therapist was having none of this. “After you were diagnosed with hypopara, how did you go from knowing nothing about it to being a well-informed advocate who successfully joined a clinical trial?” she asked.

I explained how I’d dug for research, studied pharmacy, and then built a community and a medical team that supported me.

Then she asked, “How were you able to write a book for your grandma in such a short amount of time?”

I spoke about spending years learning the craft, attending workshops and conferences, volunteering to be a board member for my local nonprofit writing group, making connections, persisting when every answer was “no,” publishing eight books, and building a wonderful support crew.

Then, with the audacity of a therapist who had just proven her point, she reminded me that I’d spent two decades of my life learning how to live with a rare disease. I then replicated the process with my writing career. I’d figure out what to do no matter what happened, she promised, even though I couldn’t see the future. All I had to do was trust myself, something I had proven I was worthy of doing multiple times.

I sat there in stunned silence for several moments as her words clicked into place. Despite the absolute hell that hypopara has put me through, it’s helped me learn how to solve problems on a larger scale. I can often look at a situation, figure out what steps I need to take to get to my desired outcome — like joining a clinical trial — and then work toward that goal.

My book is now being read by editors I know by reputation at household-name publishers. Regardless of whether a book deal follows, I’m viewing this moment with absolute joy. I’m proud of my hard work, and I’m grateful for everything my hypopara journey has taught me. While it’s a journey I don’t wish on anyone, I’m thankful that I’ve used my worst hypopara days to help me figure out how to chase my dreams.

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.