Celebrating my one-year anniversary with Hypoparathyroidism News
Writing these columns makes me feel like I am part of something bigger
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This week is the one-year anniversary of my first column with Hypoparathyroidism News! It’s been an incredible experience, and I’m so thankful to have been given the opportunity to share my rare disease journey. Looking back over the past 43 columns, I’m emotional at these snapshots of my life.
In my first column, “Before my hypoparathyroidism diagnosis, I felt it in my bones,” I shared that “it took 10 years before I found an endocrinologist who specialized in hypoparathyroidism. … I never want anyone else to go through what I did, and I hope my column helps others realize they’re not alone.”
Writing these columns made me feel like I was part of something bigger. I’d hoped that by sharing topics like picking the right calcium supplement, practicing more self-advocacy in a hospital setting, and documenting my injection mistake, I’d give patients easy-to-use tools I learned through trial and error. There is so much loneliness in isolation, so much hopelessness in not being able to connect with other patients who are going through something similar. It took me 11 years to meet another patient with hypopara (a shortened name for my disease), and now, through my columns, I’ve continued to build a wonderful community alongside fellow Hypoparathyroidism News columnist Bari Vapnek.
Connecting in a big way
When I started, my biggest challenge was how vulnerable I had to be to make a connection. While I’m a social butterfly, I’d put up many walls on the internet regarding what I’d share about my health. It’s easy to talk about the basic facts of hypopara, and even easier to chat about writing books. But this column forced me out of my comfort zone, requiring me to dig deep and pull out the things I didn’t want to say out loud.
I’ve since turned a spotlight on my mental health and the hard days, chronic pain, bad vertigo spells, and even how long it took me to accept that I was strong enough to wish for success in my publishing career. I’ve shared about grief and its physical effects on my body, and how sometimes looking into the future scares me most of all.
There have been incredible moments as well! In October, I had my first book signing since 2019, and it was the most amazing experience. I signed with one of my dream literary agents over the summer. And I celebrated my second anniversary on Yorvipath (palopegteriparatide).
I know my words aren’t for everyone, nor should they be. The specificity of my journey and writing style won’t be a match for every patient and caregiver out there. But that specificity will allow some people to connect in a big way. That feeling of being seen, of saying, “Yes! I get this. I’ve been here, too.”
Words are magic. They can be silly and flippant and cause giggles. They can be life-changing and moving, like a poem. They can write laws and change them. They can assign diagnoses and prescribe medication, express sympathy and apathy, sadness, and the most profound joy.
As I look back on this past year at the vividly documented journey I’ve shared about my disease, my questions — both medical and existential — and my hiccups, I’m so grateful. Thank you to my editors, my team, and especially my readers for your support and attention every week. I can’t wait to see what 2026 has in store!
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.
Bari Vapnek
I love this and you!! Happy Anniversary. It's a privilege to work with such an accomplished autoer. I am so proud of you! Thank you for paving the way for me!