KAWASAKI – unenviable experience with a rare disease

KAWASAKI – unenviable experience with a rare disease

Kawa (川) means river, and saki (崎) means cape or promontory. So, the name means “promontory by the river. When reality is not so poetic:

“When the mixed feeling of helplessness, despair and almost no hope with the revealing symptoms of an unknown disease gradually changes to more and more hope to the point of certainty that the little fighting organism of a six-year-old boy subconsciously fought and coped with the insidiousness of the syndromes of a rare disease called Kawasaki diseases.”

The sight of a six-year-old boy lying in a hospital with a fever, limp, exhausted, and fed only by infusion containers, while no one knows and has no idea what is happening, where such a disaster came from, and what his condition is, the solution is truly overwhelming. It is not a general statement, but a personal experience, when my grandson Jakub suddenly fell ill, developed a high fever and had to be taken to the hospital. 

In such a situation, it is difficult to find a comparison to what is fair and why providence plays with not only the fate of a boy who is just beginning to define his mission in life, but also the fate of everyone around him and not only those closest to him. It provokes an awareness of real values ​​and especially an awareness of the reality that caring for the closest family members is much greater than caring for oneself.

Day after day went by and gradually more and more syndromes of the disease appeared and no one knew when and where it would end. Consultations about the disease with medical experts in immunology at all levels took place on an hourly basis, and it was not until the fifth syndrome that a certain conclusion was made that it was Kawasaki disease. The treatment was defined and Jakub began to recover slowly but surely, and we were able to take him home with great relief.

But what was it and what did we have such a terrible experience with, and what does Kawasaki actually mean in medicine? 

Kawasaki disease is a rare illness that usually affects small children. Other names for the disease are Kawasaki syndrome and mucocutaneous lymph node syndrome. It is a type of vasculitis, which is inflammation of the blood vessels. First identified in Japan in 1967.

Kawasaki disease is characterized especially by fever, redness and swelling of the hands and feet (often followed by peeling of the skin), conjunctivitis, a reddish rash typically on the abdomen and groin, inflammation of mucous membranes (as of the tongue and throat), and swollen lymph nodes in the neck. It may progress to sometimes life-threatening inflammation of heart muscle and coronary artery damage, such as bulging and thinning of the artery walls.

The first-line treatment for Kawasaki disease: The boy was started on a high dose of aspirin and IVIG – intravenous immunoglobulin, an infusion containing antibodies collected from thousands of blood donors.

And now?

This Kawasaki experience took place eight years ago, and today is my grandson Jakub 14 years old, finishing primary school and planning further studies with a clear vision that he wants to become a designer of agricultural machinery. In addition, he completed eight years of classical guitar studies and is dedicated to the Blues Rock Generations project www.brgenerations.com & with none other than his grandfather. 

Stefan Adamec