12-year-old hockey player Tyler Singletary is a great team player and master on the ice. But, as reported by CBS17, Tyler found himself up against a new opponent in 2019 when he was diagnosed with Kawasaki disease.
What is Kawasaki Disease?
Kawasaki disease, also known as Kawasaki syndrome or mucocutaneous lymph node syndrome, is an acute illness that most frequently affects children under age 5. Those with Kawasaki experience a fever that may last longer than normal, swollen lymph nodes, a rash, or swelling of the lips.
According to the NIH, it is difficult to pinpoint an actual physiological cause for Kawasaki disease. About 10-20x more cases occur in East Asia than elsewhere, though up to 20,000 U.S. cases are diagnosed each year. Researchers believe the syndrome could be caused by a mix of genetic and environmental factors, as cases tend to occur in specific seasons and geographical locations. However, there has been no evidence of any viral or bacterial activity.
This syndrome has been associated with a variation or mutation in the ITPKC gene, which stops the body from being able to reduce T-cell activity. Immune proteins and cells then build up in bodily tissue, causing inflammation. Families with a history of Kawasaki disease are more likely to have children who get it.
To read more about Kawasaki disease, click here!
It all started with a fever. But over the course of the next few weeks, Tyler’s family began to grow more worried. His condition seemed to worsen.
Something happened with Tyler’s doctors that many people in the rare disease community know well: they were flustered by his progression and unsure of his diagnosis. Although clinicians often have the patient’s best interest at heart, it can be disheartening when a patient feels sick, in pain, or uncomfortable with no idea what is going on.
Tyler lost 10% of his body weight and began hallucinating. He said:
“There were things that I normally don’t see in my room, and I was like, ‘Something’s wrong.'”
His parents faced similar fears during his diagnosis. During his hospitalization, his father Jason stated:
“He was on epidrip, full oxygen, and everything. They were not gaining ground on the disease at that time.”
However, after two full days in the hospital, Tyler received his diagnosis: Kawasaki disease.
After treatment, Tyler went back to what he loves – hockey. It was tough at first. His performance during relay drills was not as strong as he hoped, and he was frustrated.
But now, just five months after his diagnosis, Tyler continues to play, honing his skills every day. By sharing his diagnosis, Tyler and his parents are helping to bring attention to Kawasaki disease and encourage others to pursue their own diagnoses when things don’t feel quite right.