BALTIMORE — Marianne Clancy shares memories of her family but they also share something else, chronic nosebleeds.
“My mother was plagued by nosebleeds everyday of her life,” said Clancy.
Clancy, along with her aunts, uncles, cousins and siblings, would all get frequent nosebleeds. It's a seemingly minor nuisance that the family never paid much attention to, until it became something they couldn’t ignore.
“I was just a year and a half when my 14-year-old sister died suddenly,” said Clancy.
Then at 12-years-old, her mom had a stroke.
“I came home for school happy go lucky. I come through the door and she couldn’t speak,” said Clancy.
10 years later, Clancy’s mother died of a heart attack. They didn't know it then, but she had Hereditary Hemorrhagic Telangiectasia (HHT).
“Generally when you find one person, you find an entire family. It was a relief to get diagnosed and get treated, to know that I won’t hopefully meet the same fate that my mother did,” said Clancy.
HHT is a genetic blood vessel disorder that causes bleeding in multiple organs of the body.
“Which can be catastrophic and cause immediate death through stroke and hemorrhage. Then you have a more chronic lifelong problem which is chronic bleeding throughout your lifetime that can lead to transfusion dependence, low iron and anemia,” said Clancy.
The average time to get a diagnosis from the first nosebleed is 27 years.
“The estimate is about 1 in 5,000 maybe 1 in 3,500. We think it’s much more common. That’s roughly 1 and a half million people globally. Most of which is undiagnosed. So with this disease, what will happen is you have multi-generations. We have some families that will trace this back to 6th and 7th generations in their family,” said Clancy.
Clancy started working with Cure HHT in the early 90s. In 2021, she stepped in as the Executive Director.
“So many families go through this. 6 out of 10 people don’t know they have this. We had 20 people a week getting diagnosed. It was unbelievable,” said Clancy.
Their mission is to make more people aware that not every nosebleed is just that. And while there’s no cure, there are treatments that can help.
Clancy often works with Johns Hopkins Hereditary Hemorrhagic Telangiectasia Center to advance research, treatment and spread awareness.
