Patty Ketting, Executive Director of the HypoPARAthyroidism Association and a patient with hypoparathyroidism, discusses challenges of hypoparathyroidism.
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).
There are no approved therapies targeting the underlying cause of the disease so current management focuses on symptom management. However, there is currently a treatment called palopegteriparatide being evaluated by the U.S. Food and Drug Administration (FDA) with a PDUFA date of August 14, 2024.
Ms. Ketting’s diagnosis followed a neck surgery, as is the case with 75% of patients with the disease. An official diagnosis takes an average of one year, although symptoms generally occur soon after surgery. A diagnosis involves two measurements taken two weeks apart of calcium and parathyroid hormone.
The HypoPARAthyroidism Association is a patient-focused organization that provides resources and education on the disorder. A medical advisory board offers presentations, webinars, and conferences for patients to stay up to date in the space and address patient challenges. Common patient challenges include the communication with their doctors and getting physicians to understand patient’s symptoms and how they affect daily life. The organization focuses on teaching patients how to advocate for themselves and connecting them with endocrinologists. To learn more, click here.
To learn more about hypoparathyroidism and other rare endocrine disorders, visit https://checkrare.com/diseases/endocrine-disorders/
