An awareness day that’s crucial to improving our lives

‘To be an activist is to speak. To be an advocate is to listen. Society can’t move forward without both.” —  activist Eva Maria Lewis

When I was diagnosed with the rare endocrine disorder hypoparathyroidism in 1998, I felt like I was the only person in the world with this uncommon disease. The shock and confusion were overwhelming. It wasn’t until 2016, when I met Michael Mannstadt, chief of the Endocrine Unit at Massachusetts General Hospital in Boston, that I realized I wasn’t alone and that there was a community to support me. His understanding and guidance were a beacon of hope during my darkest days.

In 2019, I discovered that one day out of the year is dedicated to raising awareness about this rare disease: World Hypoparathyroidism Awareness Day on June 1. This global event enhances understanding of hypoparathyroidism. It unites patients, caregivers, families, and healthcare professionals worldwide, fostering a sense of community and encouraging advancements in both treatment and research.

At that time, I thought, “Why is this a day to celebrate? Why would I celebrate a day when my whole life had been turned upside-down?” However, after engaging with the hypopara community, I realized that this event was bigger than just me. It was about supporting others who are in this precarious situation across the globe.

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Giving a voice to the people

I love researching, so I wanted to discover the origin of this day. I learned that in 2006, Liz Glenister established Hypoparathyroidism Awareness Day in the U.K. and began encouraging others to create similar initiatives worldwide. She campaigned globally to give a voice to the people with this rare condition, and in 2010, World Hypopara Awareness Day was established on June 1. It’s wonderful to see new organizations emerging globally, such as Hypoparathyroidism New Zealand, and providing a space for patients to learn, trust, and grow together.

This year, after 20 years, Glenister stepped down as CEO of Parathyroid UK but remains a founder patron. She selflessly established this awareness day not to celebrate the past, but rather to foster hope for future generations while providing educational support and other resources. Her hard work and dedication are the reason we celebrate this day. The community is forever grateful to Glenister for creating a safe space for those with hypoparathyroidism to feel valued and treasured.

After I met with Mannstadt in 2016 following a life-altering calcium crash, he encouraged me to tell my story publicly. I was honored when Patients Rising, a project of The Patients Helpline, published my story on June 1, 2019.

I was honored once again when the Hypoparathyroidism Association invited me to share my story during a live webinar on World Hypoparathyroidism Awareness Day in 2023. I collaborated with the Hypoparathyroidism Association’s marketing and communications agency, Finn Partners, to create the name “Butterfly Effect” for the webinar to express this significant change within me.

Additionally, I developed the association’s theme of “Be the Change,” which had been used by Tyler Hill Camp, my children’s sleep-away camp  in Pennsylvania. I chose this theme because the landscape of hypoparathyroidism is continually evolving. Sharing my story was an emotional process, but it was too powerful a narrative to remain silenced. I received tremendously positive feedback from that experience and have assisted many others who reached out to me for support afterward.

World Hypoparathyroidism Awareness Day is a significant occasion dedicated to raising awareness, providing education, and supporting those affected by hypoparathyroidism. It’s essential to improving the lives of people with this condition as well as their caregivers. This Brave Butterfly will continue to spread her wings of hope, not only on World Hypoparathyroidism Awareness Day, but every day.

The best is yet to come, as we have exciting treatments on the horizon. With ongoing research and advancements in medical science, we’re hopeful for a brighter future for everyone affected by hypoparathyroidism. I look forward to celebrating and being part of the change!

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.