This week, I’ll be reconnecting with my hypopara community
The annual International Hypoparathyroidism Conference runs Oct. 3-5
When I was diagnosed with hypoparathyroidism at age 18, knowing where to go to find information or how to connect with other patients was a big problem. My general practitioners often didn’t have the expertise in my disease or time to help, and usually explained my symptoms away as anxiety. I didn’t meet anyone else with hypopara, another name for hypoparathyroidism, until I was in my 30s.
Meeting other patients changed my life. It gave me a safe space to talk about my symptoms and frustrations, and reframed not only how I saw my disease, but also how I advocated for myself. It’s so important to not only be able to locate accessible information, but also to build a community to share resources.
An opportunity to reconnect and refresh
This is why I’m so thankful for the annual International Hypoparathyroidism Conference, which runs this weekend in Texas. One of my favorite parts of conference weekend is reconnecting with everyone. We attend workshops and compare notes, and we share questions and talk about the reality of living with this condition, and our hopes for the future.
After the 2019 recall of Natpara, a recombinant parathyroid hormone and then the only hypopara medication on the market, we leaned on each other. And when the conference added a fully virtual option a year later, my friends and I added the webinars to our collection of resources that helped us navigate the ever-changing landscape of our disease.
The conference caters to patients at different points in their journey. Some sessions focus on the basics of hypopara and what treatments are available — something I wish I had two decades ago — while others share more advanced information, such as clinical trials and ongoing studies. I never miss the Q&A with some of the top hypopara doctors. During it, patients get the rare chance to talk to specialists who are deeply familiar with hypopara. I love hearing where they agree and where their treatment plans may differ, which supports the fact that not every patient responds the same way to every treatment. I’m a rare disease veteran, but I learn something from this panel every year.
I also enjoy hearing from the pharmaceutical companies about their clinical trials. I think it’s imperative that these representatives meet patients and hear about our lived experience. Learning about new treatments and where they are in the pipeline helps me be proactive about my health and prepare for discussions with my doctor about my long-term care plan. Since the Natpara recall, I’ve kept track of the medications in development, hoping I never again have to face “no options.”
I’ll be attending virtually this year, as I have a book signing next weekend and need to conserve my energy. A number of lectures are recorded for those who can’t make the live webinars and I return to these throughout the year when I need a refresher. I often suggest new patients start by reviewing previous sessions.
After the conference, I’ll post a summary on my website, which I send to my medical providers to make sure we’re all up to date. This year, I’m thrilled to be part of the Hypoparathyroidism News community, and I’m looking forward to sharing what I learn. My fellow columnist, Bari Vapnek, will also be there and I can’t wait to compare notes.
I’m thankful that once a year, the hypopara community has a place to come together and share information. Not every rare condition has this opportunity. Having lived without these resources for so long, I’m extremely grateful that I can help others learn more about our disease and community in a way I wish I had 22 years ago.
I’m looking forward to spending the weekend in sessions, posting updates on Instagram, and most of all, catching up with my hypopara friends. They are my greatest resource in my rare disease journey.
Note: 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 another 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. The opinions expressed in this column are not those of Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.
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