This Condition Impacts Over 100,000 Americans | Hypopara Series: Part 1

Welcome to our Hypoparathyroidism Awareness Day video series, which shares the stories of two women living with the chronic health condition that impacts over 100,000 Americans. Throughout this series, you will hear meaningful conversations around continued progress to improve care for this patient population, as well as personal accounts of how this rare disease can impact daily life. We invite you to learn more, stay connected, and continue following the series. Subscribe to our channel now to receive alerts when each video drops.

Patty Keating:

Hello everybody. I’m Patty Keating, the Executive Director of the HypoPARA Association (HPA) and a post-surgical patient of 10 years now for hypoparathyroidism. Recently, we did this fun project for our World Hypoparathyroidism Day that starts on June 1. We were in partnership with HPA and My Hero 360 to create a daily video series that will launch on June 1. In this video series, you’re going to hear real patient stories and our advocacy efforts.

Before that, hypoparathyroidism, for those of you that don’t know, is a rare endocrine disorder that causes low calcium, high phosphorus, and it can give you symptoms like tingling, muscle spasms, a little buzzing around your face, brain fog, arrhythmias, and calcifications in the brain, the kidneys, and in your arteries.

The standard treatment for hypoparathyroidism is high doses of calcitriol, which is active vitamin D and calcium. Majority of the patients are women, we do have men as well, but 75% of us have hypoparathyroidism because of a surgery…some sort of neck surgery that created the loss or the blood supply being different or whatever for the parathyroids that are located behind the thyroid.

The condition is chronic, there’s no cure for it and it affects about 100,000 people in the US. Recently, the FDA has approved a treatment, and you’ll hear a little bit about that in the video series.

We’re Patty Keating and Michele Rayes, we’re going to share personal experiences with you. You can follow the series at myhero360.com and YouTube @myhero.360. Have fun watching and enjoy.

Connect with the HypoPARA Association: 
https://www.hypopara.org/  
https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw  
https://www.instagram.com/hypoparaassoc/  
https://www.linkedin.com/company/hypoparathyroidism-association/  

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