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What is Hypertrophic Olivary Degeneration?
You’ve been diagnosed with hypertrophic olivary degeneration. Now what? Well, first things first, you probably want to practice saying this out loud a few dozen times to get it right. Let me tell you, it’s a mouthful. It’s fate’s funny little joke. Give a rare brain disease a ridiculous name that almost no one can…
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Rare Disease Curse: Can It Be More Than That?
I have been feeling that this rare disease is a curse lately. But then, I fell into a hot pot of kismet. I met the subject of the documentary, Love Heals directed by Krisanna Sexton, released 2022. If you haven’t watched it, you should. So, Dana (the subject of the documentary), also does some work…
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Being Angry Is Easy. Giving Grace Is Difficult
Being angry is easy. Justifiable anger has fueled the lion’s share of my life. I have a very distinct memory of a period where I only listened to Beyonce’s ‘Lemonade’ to and from work every day. This was during a particularly intense salary and promotion negotiation. The anger fueled the fire inside of me to…
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Participate And Do Your Part To Make This Better
Thoughts on participation By Christina Coates, HODA Board President I clearly remember the day that I decided to do my part and participate in the solution to Hypertrophic Olivary Degeneration. It was a Saturday morning, and I was the only person in my house awake. I posted a question in the HOD Patient and Family…