This post is for my Hypopara peeps, although anyone can read:)

This year in November marks the 10 year anniversary of me becoming Hypopara. It’s been a wild ride with many ups and downs. For now though, it seems like the ride has come to a stop. Thanks to to Yorvipath.

I was lucky within the first year or so to realize that I needed an Endocrinologist that understood this rare, somewhat complicated and often misunderstood disorder. So I searched out an Endocrinologist with knowledge

With that I found, Dr Rubin.

She is a ROCKSTAR in the Hypopara community. The real deal. She is considered (because she is) a leading expert in hypoparathyroidism. On top of being caring and knowledgeable, she is medical advisor to the HypoPARAthyroidism Association and other groups. Since she is a leader in the field, she has partnered on studies of Hypopara. I was lucky enough to also join one of the studies.

I began this study to monitor the effects of Hypopara. It began with series of scans, bone density, cognitive and physical tests, and lab work. then periodically would go in for updates. Then ended with a final day of the original scans, tests, and lab works to compare.

I was told that there were 100 people in study and then control group. Several did drop out and I was the 5th patient to complete the study. Then they get the fun job of analyzing data.

What I noticed personally from this as the study progressed……. There has been a huge improvement with Yorvipath. This fairly new drug may require more studies for long term, but I would in heart beat raise my hand for another study.

I will say the study was a commitment in both time to go in and cost to get into city, but it was well worth it. Yes, it was beneficial to me; but I hope the data helps them determine treatments and care plans since during the study I was on various treatments as available. Although I am not privy to how they are analyzing:). I have no doubt though Dr Rubin will use this to make the live of Hypopara patients better:)

I realized today too as I was filling out one of the long questionnaires that I no longer really experience symptoms. I no longer worry about crashes, experience many of the symptoms associated with it.

For those who are not hypopara wondering what a crash is…..

No more though. I told Dr Rubin that I take no supplements, calcitriol, or an other items to control my levels. That being said, I will forever run with extra calcium just in case.

Anywho….. I am so happy to have participated and I am very lucky to have been diagnosed with this when there are so many new helpful treatments now available!

Now question for you

Would you participate in a study if available to you?