Precious, Not Fragile - a Column by Heather Novak

Yesterday marked the 23rd anniversary of my hypoparathyroidism diagnosis, and the first time I’ve finally accepted that my condition is not my fault. Logically, 41-year-old Heather knows that 18-year-old Heather isn’t responsible for this disease. It was a combination of tumors on my parathyroid glands, a birth defect that…

June is one of my favorite parts of the year. In addition to it being Pride Month, June started with World Hypoparathyroidism Awareness Day on the first. This month, two of the communities I advocate for come together. My life goal is to live authentically out loud, as…

One of the hardest parts about having occipital neuralgia and myofascial pain syndrome alongside hypoparathyroidism is trying to balance the symptoms. For instance, if my calcium level dips too low, it can cause my muscles to tighten and spasm, which in turn causes more pressure on my already injured…

My physical medicine and rehabilitation doctor (PMR) explained to me that when one thing is off in the body, especially with an endocrine disease like hypoparathyroidism, it can cause a ripple effect. While my hypopara isn’t the direct cause of my myofascial pain syndrome, it is a contributing…

Chronic illness doesn’t come with a pause button or a manual. Having hypoparathyroidism and several comorbidities means my best-laid plans too often get turned on their head. After five weeks of stable occipital neuralgia symptoms, I was counting down the days to see one of my favorite…

After three more diagnoses and five weeks of recovery, I’m thrilled to be back writing columns. Over the past year, I’ve documented my journey to finding solutions to my increasing pain levels. At first, my medical team agreed that a large part of my pain stemmed from hypoparathyroidism…

I’m often asked by fellow hypoparathyroidism patients how they can get an at-home calcium tester, and I’ve always had to explain that there wasn’t an option — until now. Finally, one is in development! Saturday is Rare Disease Day, and I wrote last year’s Rare Disease Day column…

It’s 4:30 a.m. and I’m staring at the wall, willing my brain and body to go back to sleep. I can’t tell what awakened me — a sound outside, a bad dream, the insistent pain in my hip and shoulder — but it doesn’t matter. With a sigh, I reach…

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.

Note: This column describes the experiences of a columnist and/or an interviewee with several therapies, including Yorvipath (palopegteriparatide), Calci-Chew (chewable calcium carbonate), One-Alpha (alfacalcidol), and Forteo (teriparatide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When I started my journey…