Katie Gillick, Patient Advocate at Orsini Specialty Pharmacy, discusses the importance of patient and physician communication in the care of hypoparathyroidism.
Hypoparathyroidism is a rare endocrine disorder in which the parathyroid glands do not produce enough parathyroid hormone (PTH). Common signs and symptoms include cataracts, muscle cramps, tetany, pain in the face, legs, and feet, seizures, tingling sensation, and weakened tooth enamel.
Ms. Gillick’s journey began with thyroid cancer at age 23. After two surgeries to remove her thyroid, she began to experience symptoms of post-surgical hypoparathyroidism. Following her diagnosis, she was put on standard-of-care treatments which did not help control her symptoms. It was then that she decided to enroll in a phase 3 clinical trial of injectable parathyroid hormone. Ms. Gillick has now been on this medication for years with excellent management of her condition.
From both personal experience and patient survey results, Ms. Gillick describes brain fog as the biggest symptom burden of disease. This symptom affects nearly all aspects of daily life including relationships, ability to work, etc. However, because this symptom is hard to measure, it is not always properly addressed.
Ms. Gillick wishes that doctors knew that lab values do not always, and frequently do not, correspond with patients symptoms or lived experiences. It is therefore important for physicians to have good communication with their patients and not just brush things off when lab values look good.
Orsini Specialty Pharmacy dispenses over 70 different therapies for over 50 rare conditions, offering special handling and mail order options that retail pharmacies may not be able to offer, helping more patients get the medications they need.
For more information, visit https://www.hypopara.org/
To learn more about hypoparathyroidism and other rare endocrine disorders, visit https://checkrare.com/diseases/endocrine-disorders/
Tags: endo, genetic, diagnosis, advocacy
