Hypoparathyroidism is a rare disorder that is not very well known. Raising awareness about the disease can help to speed up diagnoses and research into better medical treatments as well as gain support. Below you will find more information on raising awareness about hypoparathyroidism and how you can help.
What is hypoparathyroidism?
Hypoparathyroidism is a condition where the body does not produce enough parathyroid hormone (PTH), which regulates blood calcium levels. The lower level of PTH results in low levels of blood calcium. Calcium is an important mineral needed by the body for cellular communication, muscle contractions, and bone health.
Why is it important to raise awareness?
A recent survey of 146 patients living with hypoparathyroidism found it can take up to 10 years for patients to receive a diagnosis. Half of the patients in the study reported that it took more than five visits to a physician to get a diagnosis. A quarter of the patients had to wait over a year, and 10% had to wait more than 10 years to receive a diagnosis.
Approximately 42% of participants in the survey also reported having “calcium crashes” (hypocalcemia), where their calcium levels dropped to dangerous levels and they required emergency or urgent care visits. Of those patients, 56% did not feel the clinical staff knew how to treat their hypocalcemia.
Raising awareness is critical to increasing the knowledge of healthcare professionals and the general public. This can aid in faster diagnosis, better clinical care, and more research funding. Raising awareness is also important to make policy changes at the government level.
How can I help raise awareness?
There are a number of ways in which you can help raise awareness about hypoparathyroidism.
You can volunteer with or donate to an organization focused on issues related to the disease such as the HypoPARAthyroidism Association, Parathyroid UK, or the National Organization for Rare Disorders (NORD). These organizations have resources and events to help increase awareness and educate patients and the general public about hypoparathyroidism.
You can also share your story through news media outlets or social media. World Hypoparathyroidism Awareness Day is marked on June 1 every year and presents a great opportunity to share your story and information about the disease on social media.
Another significant annual event is Rare Disease Day marked on Feb. 28. You can post photos and stories to #RareDiseaseDay to show your support. There are templates on the NORD website that can make it easier to send your stories to news outlets.
You can also raise awareness by writing to your located elected officials. You can tell them your story and let them know about initiatives that matter to you. NORD has a section on its website with information to help you find out how to write to your legislator as well as key issues for which the organization is lobbying, such as a bill to end surprise medical costs.
Last updated: Sept. 25, 2020
Hypoparathyroidism News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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