Michelle Reyes, Associate Director of the HypoPARAthyroidism Association and patient with the disease, discusses living with hypoparathyroidism and how the HypoPARAthyroidism Association can help.
Hypoparathyroidism is is a rare endocrine disorder in which the parathyroid glands in the neck do not produce enough parathyroid hormone. Common signs and symptoms include abdominal pain, brittle nails, cataracts, dry hair and skin, muscle cramps, tetany, pain in the face, legs, and feet, seizures, tingling sensation, and weakened tooth enamel (in children). It may be caused by injury to the parathyroid glands (e.g., during surgery).
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.
Visit https://www.hypopara.org/ to learn more about their services and resources.
To learn more about rare endocrine disorders, visit https://checkrare.com/diseases/endocrine-disorders/