Projects Are Happening

I’ve had kind of a whirlwind two weeks. A few things I wanted to get out: 1. I heard you, all of you. Clearly there’s a HUGE issue with chronic illness patients finding local support. I’m working on developing a project that’s going to fix that problem. For updates on that, check out the new...
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The Headache Hat: My New Favorite Thing

I’m on a lot of painkillers right now, but I’m pretty sure I just discovered my new favorite thing. It’s called a Headache Hat. And it’s freaking genius. In fact, I’m not sure why this isn’t a mass-produced product in every CVS in the country. It’s so simple, yet so effective and solves the frustrating...
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Are You Undiagnosed? Share Your Story

It took 19 years for doctors to finally diagnose me with a rare immune deficiency disease. The total number of undiagnosed patients is unknown but considered to be vast. To provide some perspective on this epidemic, consider that it takes an average of 7.6 years in the United States to uncover a rare disease diagnosis. Worldwide there...
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The Determined Weeper

God, this has just been a week full of weeping. Like full on, mascara running, call my mom ten times more than usual per day, terrify my husband weeping. And the funniest part of it all? Nothing is outrageously wrong. No terrible thing has happened in my life. Nobody died. Nobody called me a name...
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The Balancing Act’s Ongoing “Behind the Mystery: Rare and Genetic Diseases” Series Features Rare Disease Author Ilana Jacqueline

Pompano Beach, FL— One in every ten Americans has a rare disease.  It’s a startling statistic, but it’s one that will help even the healthiest of individuals realize how random the genetic lottery really is. This is also why the patients of the rare disease community have chosen the rarest day of the year to spread awareness. On the...
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