Mayo Clinic gets $100,000 donation for research of uncommon condition
Indiana resident Heidi Henson turned to grab a bottle or toss a ball with her kids — one of her normal, playful daily activities as a young mother.
At that moment, Henson experienced a spontaneous coronary artery dissection, or SCAD.
SCADs cause heart attacks and they happen most often in women. It is "a type of heart attack not created by a blockage but by a tear in the artery," says a description provided by Mayo Clinic.
SCAD is the No. 1 cause of heart attack in young, pregnant women. And, said Dr. Sharonne Hayes, founder of the Women's Heart Clinic at Mayo Clinic, it's possible SCAD is the No. 1 cause of heart attacks in women under age 50 overall.
Henson came to Rochester this week to present Mayo Clinic SCAD researchers with a combined research check for $100,000, together with another family affected by the ailment.
"There's nothing but unanswered questions when it comes to SCAD," Heidi Henson said, noting that she and her family hope to help researchers answer some. Henson had run three marathons, was a two-sport college athlete and was young and healthy when she experienced her dissection. That's actually a typical scenario, Hayes said.
"We want to know if our kids are going to be affected," Henson said. Symptoms of SCAD can be like those of other heart attacks. Henson experienced chest pain, dizziness, nausea, left bicep pain and teeth pain.
SCAD was once considered rare.
But Hayes now calls it "uncommon" instead.
Bob Alico of Arizona, who presented the check with Henson, founded a nonprofit called SCADresearch.org when his wife Judy died after a SCAD.
He believes SCAD might be much more common that currently known and that there might be genetic links. But more research is needed, he said, for a condition that doesn't get much financial attention from donors.
After his wife died, health providers couldn't tell him the cause. She was otherwise healthy, had low blood pressure, her cholesterol wasn't high, she was not overweight and she did not have diabetes or smoke.
Alico eventually connected with Mayo's Hayes and her research and medical teams. Now, when a family reaches out to the nonprofit he started, "we send everything to Dr. Hayes."
She and her team help heart experts across the country learn about, and sometimes urgently treat, SCAD.
Heidi and her husband Nat Henson received the news that she was pregnant — the day after she had her heart attack. The baby she was pregnant with did not survive.
The family traveled to Rochester this week so their remaining kids could see the good people and places of Rochester, where she received treatment, and to present the check.
Now, she hopes answers will flow.
"This money will jumpstart several projects that are really important to you, to us," Hayes told the donors and SCAD clinicians and researchers who gathered at Mayo's Gonda Building Monday.
Alico said his wife, a graphic designer with her own design business, spoke to him in January 2011 and simply said, "I don't feel good."
She was getting pains up and down her right arm. Alico knew heart attack pains are more typically on the left arm because he'd been a health minor in college. But, soon, her vision became blurry and the symptoms rapidly progressed.
"I love you," she said.
"I love you too, honey," he said.
That was the last conversation they had.
Alico said he knew after his wife's death that he had two choices. He could turn inward and separate himself from the world. Or, he could turn outward and make a difference.
He chose to turn outward and started ScadResearch.org.
It's very common with SCAD, Alico said, for the person experiencing the dissection to say something like, "I don't feel very good."
There's nothing yet known that can decrease the risk of SCAD or a recurrence, which occurs among about 20 percent of survivors, Hayes said.
But if a SCAD heart attack occurs, she said, rapid medical attention is the crucial factor.
Mayo has done whole-exome genetic sequencing and has identified some candidate genes that may be involved in SCAD.
Currently, Mayo is planning to study those genes in zebrafish models.
"We've answered some questions, but we've raised more," Hayes said.
SCAD resonated with her, she said, because even though she hadn't been planning to be a researcher "I could see the direct impact — these were my patients."
Even though it's hard to get research funding for uncommon medical conditions, she said, she hopes even more research will be possible as a result of the money donated Monday.
"You are why we keep doing it," she told the donors. Research is hard. Fundraising is hard," she said. But, "it is the patient…that keeps us going."