As Thanksgiving this year falls on the heels of a contentious presidential election, politics may be one dinner conversation topic many try to avoid.
In its place, you can be the one to prompt a conversation on something that could actually save you or your loved one’s lives: family medical history.
Marianne Clancy, 67, of Monkton, Maryland, says her family suffered for decades before several members, including herself, were diagnosed with hereditary hemorrhagic telangiectasia (HHT), a genetic blood vessel disorder.
It started in the ‘50s when Clancy’s 14-year-old sister, Angela, died suddenly from what they thought was walking pneumonia. When she was 22, Clancy’s mother died from heart failure. She also has cousins who suffered from hemorrhages and strokes. For Clancy herself — it was major nosebleeds, sometimes lasting hours.
In the early ‘80s, Clancy and her husband wanted to start a family. So, she consulted a doctor regarding her nosebleeds and family medical history.
“They tested me for Von Willebrand disease and told me that there’s nothing wrong. ‘You’re fine.’ And so, I proceeded to have one child,” Clancy said.
Years later, Clancy got a call that her nephew suffered a medical emergency involving lack of oxygen during a basketball game.
“[We] started reflecting back to the tragedy that went on in our family with my sister and fortunately, we had the internet, and started doing a literature search and found, you know, maybe this is due to this disease HHT,” Clancy said.
Her nephew’s case was ultimately confirmed to have HHT, and not long after, Clancy was diagnosed herself.
“I had, at the time, three children under the age of six, and I was devastated, because I thought I did everything. I was being proactive. I sought expert help. I went in with this extensive family history,” Clancy said.
Her mother’s death has since been attributed to HHT, and while it’s not certain her sister had the disorder, Clancy believes it’s the reason for her death.
Today, Clancy is the executive director of Cure HHT — a Maryland-based organization dedicated to advocating for patients and raising awareness around the disorder.
“So many people have this disease and are unaware and are walking around, and we need to educate,” Clancy said. “And it’s considered a rare disease, but it’s pretty much as common as cystic fibrosis, and everybody’s heard of that.”
She says a critical part of that education can start with conversations among family members.
“I think that family history is critically important. And if there’s something in your family that is unusual, that other people suffer from. You really need to start looking … if you have children going into the nurse’s office for nosebleeds chronically, you know there needs to be questions you need to be asking,” Clancy said.
The Thanksgiving holiday — often when extended family comes together — can be a good place to initiate these conversations, Clancy says. In addition, she says advocating for yourself in medical settings is necessary.
“Doctors are very busy, and our medical system is fractured, and so what you must do is you must question, and you have to be relentless, because this is the health of yourself, your family, your loved ones,” Clancy said.
Her message to anyone unsure about bringing up the topic this Thanksgiving: Think of your family.
“Your children are going to want you here, and you have to be healthy and take steps to ensure that you are you’re doing everything that you can to take care of yourself,” Clancy said.
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