Story by: Henry Winkelhake on February 4, 2020
Kawasaki disease — a rare condition that most often affects children under 5 — comes with symptoms such as rash, peeling skin, swelling, redness, drying and cracking of the lips and tongue.
Another symptom is inflamed blood vessels, which can give rise to a variety of heart issues and makes Kawasaki disease the leading cause of acquired heart disease in children. Fortunately, cardiovascular health returns to normal within a couple months for the vast majority of patients.
Long-term effects of Kawasaki disease, however, can include heart valve issues, abnormal heartbeat rhythm, inflammation of the heart muscle, and aneurysms (bulges in blood vessels).
These lasting heart conditions are rare. Less than 2% of patients experience coronary artery enlargement that carries over into adulthood. However, when complications do persist, they can impact patients long after childhood symptoms of the disease have subsided.
In November 2019, many were amazed by the story of Brad Phelps, 22, whose heart stopped for 12 minutes after collapsing at a soccer game in northern New Jersey. Doctors in New York limited damage to his brain by lowering his body temperature to 91.4 degrees for 24 hours.
The reason Brad — a seemingly healthy young adult — collapsed suddenly was the lingering effects of Kawasaki disease when he was 5.
“Unfortunately, young adults often will consider a childhood disease as ancient history. They feel fine now and consider themselves cured,” said Walter L. Sobczyk, M.D., pediatric cardiologist with Norton Children’s Heart Institute, affiliated with the University of Louisville, and an adult congenital heart disease specialist. “But in reality, they may still have a dangerous heart condition that can strike with little warning, and they need to stay on top of their health.”
In many cases, anti-platelet therapy to prevent blood cells from sticking together and clotting is used to reduce the risk of stroke or heart attack. Aspirin or warfarin (sold under brand names Coumadin and Jantoven) are medications that can thin blood and reduce clotting.
Those who have lasting complications typically are advised to avoid playing contact sports due to potential for uncontrolled bleeding from the anti-clotting treatments.
Physicians recommend that patients schedule regular checkups for risk assessments every couple of years. These visits allow medical staff to perform tests and provide recommendations on appropriate levels of physical activity.
We care for children with congenital and acquired heart conditions from infancy into adulthood. Our adult congenital heart disease program is growing to meet the needs of thriving adults who overcame childhood heart conditions.
“Adults with a history of coronary artery involvement due to Kawasaki disease should have
lifelong engagement with a specialist familiar with Kawasaki disease,” Dr. Sobczyk said.
Those with heart issues resulting from Kawasaki disease typically are advised to avoid a sedentary lifestyle. Inactivity is just as dangerous as over-activity, because it allows clots to form in arteries.
Patients typically should make health-conscientious lifestyle decisions, such as refraining from smoking, maintaining a diet low in fat and cholesterol, limiting alcohol consumption and controlling their blood pressure. Reproductive health counseling is recommended for female Kawasaki disease patients.
While Kawasaki disease’s long-term effects can present challenges to adults, these obstacles can be overcome with mindfulness, determination and collaboration with medical professionals.