Getting a diagnosis of hypoparathyroidism can create confusion, fear, and uncertainty. You likely have questions such as “How will I manage this?” or “How will this impact my life?” or even, “What does this all mean?” It’s important for you to know that your feelings and questions are all normal and justified. You are not alone. There is an entire community of people with hypoparathyroidism, lovingly called “the HypoPara community,” who are ready to support you and walk alongside you on this journey.
While navigating this condition can be challenging, many in our community have learned how to advocate for themselves and how to work with their physician to optimize the treatment that works best for them. Our community is made up of runners, triathletes, dancers, actors, executives, lawyers, chefs, stay-at-home parents, and more.
While we each share the diagnosis, the way it manifests is as unique as the individuals who make up our community. Some of us cannot absorb calcium supplements and require routine IV treatments; others require significant doses of at-home calcium daily to function, still others are on off-label treatments being closely monitored by their physicians. We cannot compare ourselves to our fellow HypoPara members, but we can learn from one another, and we can join each other in relentlessly advocating to ensure we all get the best possible care.
We know this is a confusing time. We want to wrap you in support as you begin this path. We are a new organization, but we are not new to hypoparathyroidism. Over the coming weeks, we will be continuing to provide resources and support for those of you who are new to this condition. In the meantime, check out our resource library, and if you haven’t found a provider you trust, check out our provider search tool to look for someone near you that has been recommended by a HypoPara community member. Also, be sure to sign up for our newsletter below so that you can stay informed and be updated as we roll out our programming.