I’m heading to Sacramento, CA, for the annual conference of the Hypoparathyroidism Association . “HypoPara,” as the condition is also known, is an uncommon disease, listed in the database of the National Organization of Rare Diseases (NORD ).
Hypoparathyroidism can be inherited or, more commonly, can arise as a post-operative complication of thyroidectomy.
That’s me. I had a thyroidectomy.
Why Remove a Thyroid?
The radioactive iodine released in nuclear disasters—like Chernobyl —and radioactive contamination—like Hanford –finds its way into the bodies of people who live nearby. Often right into the thyroid gland. Radioactive iodine causes thyroid cancer.
How do you treat thyroid cancer? Remove the thyroid gland.
Goodbye Cancer, Hello Exhaustion and Seizures
If you don’t have a thyroid gland, your “Parathyroid” glands may become unreliable. These four small glands produce PTH, which regulate levels of calcium and phosphorus in the body. In Hypoparathyroidism the PTH produced is really low.
So you feel awful: seizures, tetany, muscle cramps. Pain in your legs, feet, abdomen and face. Fatigue or weakness. Cataracts, headaches, depression and memory problems. Kidney failure.
This is my first Hypoparathyroidism Association conference. I am extremely thankful that this organization exists to help those of us struggling with this extremely disabling disease.
Thousands of People in Unnecessary Pain
But I can’t help but being angry when I think about the thousands and thousands of people who face such pain and difficulties just trying to find ways to live in the aftermath of the devastating health impacts of radiation. And I’m scared, too.
I spoke this weekend with someone who has dealt with hypoparathyroidism for several decades. Her kidneys are now failing. She is trying to hold on until a new synthetic human parathyroid hormone obtains FDA approval. She mentioned that bone tumors have been seen in rat studies using this hormone.
I hope to learn some better news at the conference.
For more information on the Hypoparathyroidism Association and its work: http://www.hypopara.org