Rare Disease Day 2023

It's that time of year again! As always, I get REALLY into #RareDiseaseDay festivities all throughout the month, culminating in a big charity event on Rare Disease Day, which falls on the last day of February. I'm excited to share that not only am I doing the usual Rare Disease Day charity stream on my … Continue reading Rare Disease Day 2023

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What PE taught me about my Rare Disease

https://soundcloud.com/sunny-ammerman/what-pe-taught-me-about-my-rare-disease I had originally planned for this article to be about my history of failing Physical Education (PE) classes. I suspected that because I was not properly educated on the health issues caused by my rare disease at the time, and had an inability to exercise like my peers, that this had a negative impact … Continue reading What PE taught me about my Rare Disease

Rare Disease Day 2019

Today is Rare Disease Day! The theme for this year is #ShowYourStripes, which I love because of its reference to the term “zebra”, which many of us with rare disorders call ourselves. This comes from the old phrase physicians turn to when dealing with patients; “when you hear hoofprints, think ‘horse’, not ‘zebra’.” This mindset (while reasonable) … Continue reading Rare Disease Day 2019