By Lauren Linhard – [email protected]
A patient shows up in the ER with shortness of breath, nosebleeds and visible blood vessels on the tongue. It’s a story those of us in the HHT community almost know by heart. But for the more than 8 million viewers who watched “Chicago Med” on February 16, it most likely was the first time they had heard of Hereditary Hemorrhagic Telangiectasia.
Who else jumped off their couch when the doctors oh-so-casually mentioned HHT as the most likely diagnosis? I know I did. Even though HHT is part of my everyday life, it was such a shock to hear the disease mentioned and explained on public television…to more than 8 million people.
Of course I was yelling things like, “Mention it’s genetic!” and “He could have lung AVMs!” at the screen. And at first I was disappointed in the boiled down explanation of the disease. But you know what? Nosebleeds – the number one symptom the general public can relate to – was mentioned as a symptom of HHT, and more than 8 million people heard it (sorry, I can’t get over that number).
Imagine the amount of people you could reach about HHT by sharing your story with local news channels and publications. All it takes is one voice to make a hundred, and then a thousand, and then…maybe 8 million. You have the power to answer, “What the HHT?”.