Desirre's Story

By someone still fighting—and still standing.*
In July 2024, I had a total thyroidectomy. The doctors told me the odds of complications were almost nonexistent—less than 0.01% chance that my parathyroid glands would be damaged. And even if they were? “You’ll just need to take calcium supplements for life,” they said, brushing it off like it was no big deal.
But it is a big deal. It’s everything.
Two weeks after the surgery, I was rushed to the ER. My calcium level was 6.2, critically low. I had no idea what was happening to me, and neither did the hospital staff—because I couldn’t even explain it. My muscles were twitching, my heart was racing, my thoughts were scrambled. They gave me IV calcium, which helped for a few hours… then it was gone.
Abnormal ECG’s at every visit to the hospital with racing heart, murmurs and now prolonged QT intervals which is horrible and leaves me constantly short of breath. My heart is pumping at a rate it shouldn’t be because I can’t hold the calcium in my blood to have it function properly. My body is shutting down and I’m watching it in slow motion
That scene repeated itself three more times over the next four months. In and out of emergency rooms, back on IVs, never stable. No one could figure out how to keep calcium in my body. Eventually, I was admitted to the hospital. That’s how bad it got. I couldn’t function. I couldn’t survive without round-the-clock intervention.
They tried every concoction they could come up with. Different dosages, different combinations. In the end, the only thing that kept me alive was a heavy routine of magnesium, calcium, and calcitriol three times a day.
It kept me going. But that’s all it did.
I wasn’t living. I was barely surviving. I had no energy. No peace. No joy. I was emotionally flat, disconnected, deeply tired—and not just physically. My body was drained. My soul was too. I cried without knowing why. I couldn’t function. I made everyone around me miserable.
My poor husband and kids stood by me, even when I wasn’t myself. They carried me through the worst of it, even though it broke them too. If anyone deserves a trophy, it’s them. I owe them everything. They didn’t sign up for this potential life threatening condition. If you want to know who really loves you put them through this and see if they are still standing beside you.
Then, Christmas of 2024, something shifted.
I met a doctor during that hospital admission—a brilliant endocrinologist. He listened in a way no one else had. He took me seriously. He told me about a new drug called Yorvipath, the first of its kind. Newly approved by the FDA. A groundbreaking treatment for people like me.
I was skeptical. I was tired of being disappointed. But I had nothing left to lose. So I said yes.
Insurance was a nightmare. The drug costs around $25,000 per month—thankfully covered by insurance after an exhausting approval process. I finally received my first dose on April 22, 2025.
Within four days, something happened I hadn’t dared to hope for: I felt alive. Truly, actually alive. I had energy. Emotion. Light in my chest. I smiled and meant it. I wasn’t in survival mode anymore—I was starting to live again. It was working.
But with Yorvipath comes weaning off calcium. And when we halved my supplements, I crashed.
Hard.
All the old symptoms returned: the fog, the fatigue, the sadness. It felt like I was right back in that hospital bed, wondering if I’d ever feel normal again. My dose needed to be increased—but that took two more weeks of waiting, approval, and holding on with nothing but faith.
I start the new dose tomorrow.
I don’t know exactly what will happen—but I believe. Because I’ve seen what Yorvipath can do. I’ve felt it. I’ve lived the glimpse of freedom. And I’ll do whatever it takes to get that feeling back.
This disease is something I wouldn’t wish on anyone. Hypoparathyroidism is misunderstood, underdiagnosed, and far more brutal than people know. It’s not just about calcium. It’s about the core of how your body works—and what happens when it stops doing that. It’s purgatory. An invisible fight.
And for me, it has taken more than just energy or peace of mind.
My relationships have been stripped from me by this disease. Some days my daughter is scared of who I’m going to act like or if I’ll be able to dress myself or even talk coherently. She is twenty years old and shouldn’t have to deal with me. My husband and son tend to take the path of Ignorant Bliss I like to call it. My son doesn’t really ask a whole lot , I know he cares but it may be too much for him. My husband in my opinion thinks this is all going to go away and I’ll be fine eventually. I don’t think he really understands the depth of this disease.
It’s taken away my ability to be an aunt to my niece, whom I love dearly. She’s only six—full of life, energy, curiosity—and I can’t keep up with her. I can’t run, play, laugh alongside her like I want to. I no longer have the joy of tending to my ducks, working in my yard or in my home. I watch from the sidelines, debilitated, missing moments I’ll never get back. That’s a kind of grief no one prepares you for. It’s taken away my ability to stay up most nights past 8pm. It’s taken away the bare minimum energy to survive. I never thought I would be a person who had to decide if it was really worth the pain and fatigue to just wash my hair. And that’s real. Sometimes I just lay there pretending to sleep because I just can’t get the energy to talk. I like to compare it to this “the lights are on but nobody’s home” it’s debilitating….But I keep showing up. I keep fighting. Hoping. Keep educating myself. Because I’m not just a person with hypoparathyroidism, I am someone’s mother, wife, daughter, aunt, and friend. I am someone who knows that better days are coming. And maybe, just maybe, they’re finally on the way.Because what’s inside of me, the grit, the courage, the refusal to just lay down and die is stronger than what this disease has broken in me. And that along with my determination is what is going to carry me to the goal line. . Ask questions, be your own advocate and never ever give up on yourself. This is by far the hardest thing life has dealt me, but I’m not giving up. I’m learning from it.
Thank you for taking the time to read my story.