Where to Find Help
Hypoparathyroidism (hypoPARA) is a rare, complex endocrine disorder that can cause serious symptoms in many organ systems. Left unmanaged, hypoparathyroidism could be life threatening. Fortunately, medical knowledge has advanced to the degree that calcium and active vitamin D can be used to elevate your calcium levels and manage your symptoms. This approach can be lifesaving but can also cause problems down the road. But there is help in the present and hope for the future.
The important thing to remember is that you are not alone. You will be better equipped to manage your condition and your life as you learn more, stay current on research and get connected to others with hypoparathyroidism. Here is a list of resources to help you get started.
I have been researching this disease for more than 20 years, and even though my knowledge of hypoparathyroidism is extensive, I am still searching for answers. Finding answers is about my family’s future.—Donna
Help from Hypoparathyroidism Answers
Be ready for the “what-ifs” of hypoparathyroidism with this kit, which contains a medical alert bracelet, a keychain tag, and a wallet ID with important info.
Our complimentary book, Getting Clarity on Hypoparathyroidism, is available both as a hard copy and in eBook format. Gain a better understanding of what causes hypoparathyroidism and how it is managed, and also read stories from people who have experience living with the disorder.
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PARADOX is an important new study about the burden of living with hypoparathyroidism. People who live with hypoparathyroidism were asked to share their feelings about living with their illness. Download this brochure and share it with your doctor to discuss the results of this research and the challenges you face living with this disorder.
Because hypoparathyroidism is so rare, it may be hard for your friends, family, and even your physicians to understand what you’re going through. This infographic, based on a study conducted by researchers at the Mayo Clinic, will help you share the facts.
The leading cause of hypoparathyroidisim is surgery on the thyroid gland or other structures in the neck. Use this informational download to learn more about what you can expect after surgery.
Download this list of questions to help you make the most of your time with the doctor.
Download this tip sheet to help you.
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- Hypoparathyroidism Association, Inc.
This is the primary US organization for people with hypoparathyroidism, offering educational resources, online discussion forums, conferences and newsletters. You can also join them on Facebook.
- Hypoparathyroidism UK
This UK site provides updates about clinical research, information about lifestyle issues and education about hypoparathyroidism. You can also connect with them on Facebook and on Twitter.
Online Support Groups
Note: Some groups require registration and/or permission to join.
Educational Webinar, presented by the Hypoparathyroidism Association
This webinar provides a review of the basic science of hypoparathyroidism, including an explanation of how the disorder affects different parts of your body. Other topics include guidance on managing the disorder and data on potential new treatment options.
- ClinicalTrials.gov/National Institutes of Health
- Genetic and Rare Diseases Information Center/National Institutes of Health
- Mayo Clinic
- Medline/National Library of Medicine
Stay Prepared with the
Emergency Resources Kit
Take charge of your care with the Emergency Resources Kit, a complimentary set of tools that will help you prepare for medical emergencies.Request a Kit
Tell Your Story
Do you have a story to share that will inspire or help others who are on the same journey? We’d love to hear it.Tell Your Story
Watch Christy’s Video
Hear Christy tell how she has learned to cope with hypoparathyroidism. Share her struggles and hopes.Watch Video
Watch Ken’s Video
Hear Ken talk about his journey from surgery to managing hypoparathyroidism.Watch Video
Watch Nancy’s Video
Hear how Nancy is meeting the challenge of living with hypoparathyroidism and working to help others.Watch Video