"Similar to many rare disorders, hypoparathyroidism is not fully understood, which translates to delayed diagnosis that leaves patients without the expert care they need to overcome symptoms and remain productive members of society," said Jim Sanders, founder of the Hypoparathyroidism Association. "With this in mind, we celebrate World Hypoparathyroidism Awareness Day and use it as a platform to serve our organization's mission to educate patients, physicians, and the public about this rare disorder, so that more research into finding new treatment options and ultimately a cure may be possible."
The Challenges We Face
Hypoparathyroidism is a rare endocrine disorder characterized by insufficient levels of parathyroid hormone (PTH), resulting in low calcium and elevated phosphate levels in the blood. The disorder affects approximately 200,000 patients in the United States, Europe, Japan and South Korea, with at least 80,000 in the U.S. alone. The majority develop the condition following damage or accidental removal of the parathyroid glands during thyroid surgery. This condition can also be inherited or associated with other disorders.
This is not an easy disease to live with. The condition presents a number of challenges for patients, including the reduced quality of life from having to deal with the continual management of symptoms, the strained ability to maintain psychological well-being, not to mention, dealing with the ongoing prevention treatments to slow the onset of long-term complications.
Daily symptoms caused by the body’s inability to maintain normal calcium levels include weakness, severe muscle cramps (tetany), brain fog, abnormal sensations such as tingling, burning and numbness, memory loss, impaired judgment and headaches, just to mention a few. Over the long term, this complex disorder causes calcium deposits often occurring within the brain, eyes, blood vessels and kidneys. Patients with Hypoparathyroidism have a 4-to-8-fold increase in the risk for kidney disease.
Why Awareness is Needed
Awareness of Hypopara is extremely limited in general but disturbingly within the medical community where it is still hardly seen.
- Many patients in critical conditions have experienced harrowing experiences in the ER setting often having to educate the medical staff about the condition, all while dealing with life threatening symptoms.
- Families and friends have been torn apart because of the never-ending dealings of having a critically ill member.
- Jobs have been lost. Life, as once was experienced, is no longer. The list goes on and it is heartbreaking.
- Misunderstandings abound on why just taking more calcium isn’t enough.
What the HypoPARAthyroidism Association is Doing
We are a nonprofit organization dedicated to improving the lives of people impacted by hypoparathyroidism and their caregivers through education, support, research and advocacy.
- We work tirelessly to bring better awareness and recognition to this condition. We team with doctors, researchers and specialists as well as pharmaceutical companies to help bring about new and more treatment options.
- We organize and host a yearly international conference to bringing medical and patient communities together as well as various workshops throughout the year.
- We are working with the FDA to help bring a more realistic understanding of hypoparathyroidism and the need for more support towards research.
- We are teaming with other organization such as NORD and Global Genes in recognition of the rarity of this disease.
- We are working toward creating a database with patient input of the occurrences of, types of, symptoms, and experiences dealing with Hypopara.
- We participate in accumulating data for surveys used for research and we follow the work of doctors dedicated to finding new and innovated treatment options.
- Our website is constantly being updated to follow the progresses being made in the world of HypoPARA and to educate and help patients in all areas of treatment and life dealings with this disease.
- We offer one on one support to members in person, with email and thru social media on Facebook and Twitter.
- We conduct fundraising and encourage donations to help support research and development toward better management options.
Every one of us on the Board of the HypoPARA Association have and live with hypoparathyroidism. We know what it’s like and are extremely aware of the pressing need for better awareness and treatment options. We hope that you will join us in honoring this day by spreading the word about hypoparathyroidism!
Be sure to buy a drink at our virtual lemonade stand and help support the work being done!
This is in fact, The Biggest Day of the Year!
World Hypopara Awareness Day Patient Videos
This information is provided for educational purposes only. It should not be used for diagnostic or treatment purposes. If you wish to obtain more information about this disorder, please contact your personal physician.