A community gathered over the weekend to honor and remember a young girl who passed away one week ago after complications from a rare genetic heart condition.
London Eisenbeis, 10, suffered from a condition known as long QT syndrome, which often goes undiagnosed.
Her passing has many parents wondering about their own children.
“It’s a shame. It’s tragic,” said Karl Ilg, cardiovascular doctor at Genesys Heart Institute.
London went into cardiac arrest last month while playing at a local water park.
“You can’t imagine how it must feel to lose a child or a child in the community. We all feel it. And although this is a very, very rare medical condition and that makes it very challenging for us to figure out and decrease the likelihood that something like this will happen in the future,” Ilg said.
Ilg said long QT syndrome can cause fast, chaotic heartbeats. The rapid heartbeats can trigger sudden fainting spells or seizures, but many times there aren’t any symptoms.
Ilg said there will be more heart screening tests coming to Genesys in the future. He also said not all screenings will catch the disease. That’s why other avenues are used to pinpoint problems.
“There are two branch points with how we can go forward from here. We can either screen the population bringing people in and ask questions, then do studies to see who is most at risk for this and then make interventions,” Ilg said.
He said a family history of sudden death or heart problems is a warning sign. If you show symptoms you should get checked out right away.
Ilg also said community outreach can go a long way toward saving lives.
“We can go into the community and make sure that we have things in place like CPR training and automated external defibrillators placed everywhere with AED programs,” Ilg said.
Long QT syndrome only affects one out of every 2,000 people.
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