Living With Hypoparathyroidism and the HypoPARAthyroidism Association

Michelle Rayes, Associate Director of the HypoPARAthyroidism Association and patient with the disease, discusses living with hypoparathyroidism and how the HypoPARAthyroidism Association can help.

Hypoparathyroidism is a rare endocrine disorder that occurs when the parathyroid glands produce excessive amounts of parathyroid hormone in the bloodstream. There are two types of hypoparathyroidism. Primary hypoparathyroidism is caused by an enlargement of the parathyroid causing overproduction of parathyroid hormone, resulting in high calcium levels in the blood. The most common treatment is surgery. Secondary hypoparathyroidism occurs due to another disease that leads to low calcium levels that in turn causes overproduction of parathyroid hormone to attempt to maintain appropriate calcium levels. This second type is common in kidney disease and following intestinal surgeries or diseases.

Symptoms of hypoparathyroidism may include:

Weak bones that break easily
Kidney stones
Excessive urination
Abdominal pain
Fatigue and weakness
Bone and joint pain

Ms. Reyes was diagnosed with hypoparathyroidism at the age of 23 following a diagnosis of thyroid cancer and thyroid removal. She describes her most burdensome symptoms as paresthesia, tetany, cataracts, and brain fog. These symptoms affect patients on a daily basis and may have an impact on quality of life.

Ms. Reyes also describes the importance of patient advocacy and support groups like the HypoPARAthyroidism Association, noting that most physicians see very few, if any, rare disease patients. Because of this, finding patient support can be important in learning what steps to take, where to go for better treatment, and how to handle symptoms.

Chapters:
Diagnostic Journey 00:00
Burdensome Symptoms 1:19
Advocacy and Patient Support 2:15
HypoPARAthyroidism Association at ENDO 3:16
What Physicians Should Know 4:12