Patty Keating, Executive Director of the HypoPARAthyroidism Association and patient, discusses the daily symptom burden of hypoparathyroidism
Hypoparathyroidism is a rare endocrine disorder in which the parathyroid glands do not produce sufficient parathyroid hormone (PTH). 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. It may be caused by injury to the parathyroid glands (e.g., during surgery). The first U.S. Food and Drug Administration (FDA) approved treatment for hypoparathyroidism, palopegteriparatide, was made available in December 2024. There are several additional treatments in the pipeline.
The HypoPARAthyroidism Association is an advocacy group that focuses on research and access to clinical trials, education of patients and clinicians, and supporting patients. The organization provides many resources, but its standout initiative is an annual patient conference. This event gives an opportunity for clinicians and industry to come together and teach patients about the disease and give updates and clinical trials and treatment options. Additionally, it is great for patients to network with each other.
The symptom burden of hypoparathyroidism can greatly impact daily life. Ms. Keating explains how one of the most burdensome symptoms, brain fog, can be severe and cause a patient to be unable to recall words or forget where they are/where they are going. She highlights the importance of doctors understanding that while a patient’s lab values may come back looking normal, asking patients is the best way to understand their symptoms and how they affect daily life. This information can provide insights into how to better manage symptoms and utilizing the proper treatment plans.
Ms. Keating’s advice for newly diagnosed patients is to document daily symptoms and know how to articulate them to doctors so that they can better understand symptom burden and more effectively manage symptoms and treatment.
To learn more about hypoparathyroidism and other rare endocrine disorders, visit https://checkrare.com/diseases/endocrine-disorders/