Family Health History Month is a national initiative that encourages families to share their medical history with relatives who may also be affected. We’re spotlighting stories of families for whom genetic testing, and talking about family health history, was crucially important – and saved lives in their families. To share your story, click here.
Jackie lost both her daughter and her son before her family received a diagnosis of Long QT Syndrome.
“In May of 2003, my mom called and said she wasn’t feeling good, and her heart was beating really fast,” she says. “My stepdad took her to the hospital, where she was rushed to intensive care and diagnosed with LQTS. He said it commonly showed up in young people, and all of the sudden, after all these years, I had an answer.”
After her mother was diagnosed, Jackie and her family went through an extensive family genetic testing process called cascade screening to make sure that those who were potentially affected got tested.
Many of her family members had positive genetic test results, including Jackie, her sister, and her two grandchildren.
“People need to realize that LQTS comes from somewhere. Get genetically tested,” says Jackie. “For me, the only way to keep going is to help raise awareness and help save someone else’s child – that gives me fulfillment more than anything, and I think it’s what my kids would want.”
To read more about Jackie’s story, click here.
Lindsey’s sister passed away suddenly and unexpectedly in her sleep at 16 years old in 1995. Her parents were searching for a reason – and found answers in a Reader’s Digest article written by our founder, Dr. Michael Vincent.
Lindsey and her family flew from North Carolina to Salt Lake City to meet with him. Dr. Vincent evaluated Lindsey’s family and her sister’s EKG, and discovered that Long QT Syndrome ran in her family. “He was able to figure out that the gene came from my dad’s side,” says Lindsey, “and that I wasn’t affected, but that it had caused my sister’s sudden death.”
“Because of that diagnosis, we were able to let our cousins know that they potentially had the LQTS gene, and they were able to get testing, treatment, and live their lives fully and safely.”
To watch Lindsey’s story, click here.
Dick and his family didn’t know about SADS conditions until his oldest son, Andrew, died suddenly from Long QT Syndrome.
After Andrew’s sudden death, the family did a cardiac workup for his older sister and discovered that LQTS ran in the family. Dick knew that he needed to contact first-degree relatives – and make sure that everyone who might be affected knew to get tested.
“There were a ton of people to contact, and this was in the early days of the internet,” says Dick. “So the first thing I had to do was build a family tree of my cousins, track them all down, and mail them materials to give to their doctors because nobody really knew about LQTS at the time. I became the custodian of my family history.”
After a sudden death in the family, Dick said that he wanted to do something to make a difference – and getting his family tested was part of that process.
“Every person who walks a path that includes a sudden cardiac death of someone they love will have energy that comes from that,” he says. “Sometimes you get angry, and sometimes you throw yourself into awareness. Telling your family and getting them tested is something you can throw yourself into and use some of that energy on.”
Read more about Dick’s story here.
Learn more about Family Health History Month here.