EmpatheticBadass is a young-at-heart writer from Ohio (Go, Bobcats & The Marching 110!)) who is passionate about being a voice for the patient perspective.
Meet Emily Deaton, 21, of Mechanicsville, Virginia. Like many people with invisible illnesses, Emily's journey to an accurate diagnosis was more of a nightmare than a dream. Emily has a disease of…
Jake Conaway learned how dangerous hereditary angioedema (HAE) can be when he was just seven years old. That’s when his father died because of the rare genetic condition, which occurs in about…
Hospitals are germ-ridden, bacteria-infested places. Hospital-acquired infections—especially staph infections—are known to be a leading cause of death among hospitalized patients. For those of us with immune systems compromised by chronic illnesses…
Understanding of cystic fibrosis (CF) has, thankfully, come a long way from its earliest descriptions of children being “bewitched” or “hexed” because their sweat tasted of salt. And the life-expectancy of kids…
No one wants to have familial hypercholesterolemia—heterozygous (HeFH) OR homozygous (HoFH). Why? It's obvious. Having too much “bad cholesterol” in your system creates all sorts of serious health issues. But…
w an withIt’s kind of a badge of honor when a rare disease gets airtime on an internationally-loved television show. And maybe the doctors at Canada’s McGill University Health Centre…
We may be heading into the holiday season, but there is no Ho! Ho! Ho! in HoFH. Most people can't even say it, let alone try to live with it:…
Hereditary angioedema may be a rare disease that qualifies for “orphan” drug status, but we are far from alone. There are HAE organizations and treatment facilities all over the world…
You won’t come across too many people in your lifetimes like Elaine Gomez and her daughter, Michelle DeMont. And you probably won’t come across anyone who has died, or nearly…
After six years of misdiagnoses and crushing disappointment, a doctor finally figured out that Katie had a rare genetic condition centered around a protein called C1 inhibitor. So many emotions…
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