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City mom raising awareness about rare childhood disease

Published on

Troy Shantz

When five-year-old Ryan Sorokan developed a sore throat and fever, his mom Angela wasn’t overly concerned at first.

“We’d think he was fine, then the fever was back,” she said.

Nine days after the first symptom appeared, however, Angela Sorokan took her son to the emergency department at Bluewater Health.

His eyes were red and lymph nodes swollen. His lips were bright red and the skin of his fingertips peeling.

Fortunately, she said, a doctor recognized the symptoms and after some tests admitted Ryan immediately that day in 2014.

Kawasaki disease is a rare but serious illness that is most effectively treated within 10 days of the first symptoms appearing. Ryan was on his 10th day.

It is the number one cause of acquired heart disease in children and affects the lymph nodes, skin, and the mucous membranes of the mouth and throat.

Left untreated, 20% of patients suffer permanent arterial damage, including the arteries impacting the heart.

How the non-contagious disease is contracted is a mystery. Sorokan said some doctors believe it appears after a specific strep infection encounters the genetic make-up of a particular child.

Pediatric cardiologist Dr. Rejane Dillenburg says discovering a cause is at a critical stage right now.

“If we knew more about the possible multiple factors causing Kawasaki disease, we could develop one or more diagnostic tests, we could develop more effective screening and prevention, potentially a vaccine, and eventually eradicate the disease completely,” she told Kawasaki Disease Canada.

Ryan has since made a full recovery.

“He’s back to his full energy, back to becoming a spunky eight-year-old,” his mom said, adding, however, that he is slow to bounce back from a cold.

Thursday, Jan. 26 is Kawasaki Disease Awareness Day, and Sorokan said she and other impacted families hope parents will learn to recognize the symptoms.

“We’d just like to make sure people are aware of it,” she said.

“It’s such a hard disease for kids and it causes so much damage.”

Kawasaki Disease Canada lists these symptoms to watch for:

* Fever lasting at least five days

* Severe redness of the eyes

* Rash on the torso and groin

* Swollen, red, dry, cracked lips

* Swollen tongue, with a white coating and big red bumps (called “strawberry tongue”)

* Swollen palms and soles of the feet

* Swollen lymph nodes

* A child may also have joint pain, abdominal pain, sore throat, diarrhea and or vomiting.

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