Joanna: I’m Joanna, and I live in El Dorado Hills, California. I’m a therapist, a wife, and a mother, and I’ve been living with hypoparathyroidism since 2017. My diagnosis came after I had surgery for hyperparathyroidism, and it was tough. I was extremely unwell. They went in to take out two overactive parathyroid glands, and biopsy the other two. Unfortunately, as a result of the operation, the remaining two glands stopped working. This ultimately led to my hypoparathyroidism diagnosis. My doctors tried treating it in different ways, but it just worsened over time. I felt like I was living in a body I couldn’t trust. I was anxious all the time — constantly worried about where the nearest hospital was. I felt miserable and I wasn’t doing any activities. We used to love traveling and scuba diving, but the unpredictability of my hypoparathyroidism and the vulnerability it caused made it difficult for us to continue doing those things we once enjoyed. It didn’t just impact me — it impacted my husband and our sons. I felt like I wasn’t as present during big life events such as their middle and high school experiences, the dinners, and concerts — all those moments. I’ve always had a hunger for life, and my husband felt like he lost his buddy. He felt helpless that he couldn’t do anything.
Stephen: The hardest part for me is knowing how quickly she can go from looking perfectly fine to being in critical condition. I’m a doctor, and I was really not prepared for how much hypoparathyroidism would impact Joanna. We could never fully let our guard down — constantly having to stay ahead of it, trying to watch her calcium levels, anticipating issues before they escalate. The lack of understanding around the condition, even within the medical community, only adds to the challenge. You really have to advocate for yourself and your loved ones. Every time she ended up in the ER, it was an immense burden and took a heavy toll on our family.
Joanna: My work as a trauma therapist is also a huge part of my life, and my purpose. I care about my clients like family, and it was really hard for me to show up and be present for them. I did my best, but at times I was undependable. While I’ve always had compassion for others’ experiences, living through the trauma of hypoparathyroidism myself has deepened that compassion. I’ve had several hospitalizations due to full tetany — full-body rigidity, laryngospasms — just a complete shutdown of my muscles. Some were near-death experiences and were truly horrifying. After one of those experiences, my endocrinologist told me that because of the severity of my hypoparathyroidism, I was a “ticking time bomb” and that we needed to explore other treatment options.
Stephen: It was incredibly difficult to watch — I knew how much pain and anxiety Joanna was experiencing. We felt like we had to do something.
Joanna: That’s when we learned about YORVIPATH. I went to see my doctor, and she let me know about a treatment option under FDA review. YORVIPATH seemed like the first prospect that could address the root cause of the disease. After discussing the benefits and potential side effects, we decided that YORVIPATH was right for me, and I began treatment at the end of 2023. I know everyone’s experience will be different. But so far for me, the biggest difference is that I feel like I’m able to more predictably manage my hypoparathyroidism. There aren’t as many ups and downs, and the lows are less frequent. And rather than treating my hypoparathyroidism in ways that felt like putting Band-Aids on a big wound, I feel like we’re treating the root cause of it, and I like that. YORVIPATH has had a positive effect on how I am able to manage my hypoparathyroidism. I encourage all of you who are going through what I went through to talk to your doctor and see if it's right for you, too. We’re all so eager to feel good, but getting there is a journey. As hypoparathyroidism patients, we must stay focused, take things one day at a time, advocate for ourselves, and seek out the best support available. For me, that includes my healthcare team and YORVIPATH. I feel so humbled by this disease. It's made me more aware of just how beautiful life is, and how I want to live it. And I want that for everyone else living with hypoparathyroidism — that they can live their own full, amazing lives.