One desperate mom named Deborah Copaken Kogan through a series of photos, being unable to diagnose her son’s eyes swollen shut, his chin and cheeks ballooned beyond recognition and his fever ever rising her son’s rare condition used Facebook to reach out and eventually figured out what his condition was and how to treat it. Kawasaki disease (KD) is rare, but the social network might have saved the child’s life.

So, Kogan’s virtual friends looked at her posted photos, and simply commented on them. She rushed her son to the hospital.

An unofficial Facebook blog stated:

“There is no virtual in feelings of that magnitude. Perhaps just as in the real world, with your real life, and quote-unquote real friends, your Facebook friend network is what you make it. Accordingly, old adages apply: Choose your friends wisely. Put in as much as you expect to get out.”

So what is Kawasaki disease?

The disorder, first described in 1967 by Dr. Tomisaku Kawasaki in Japan, often begins with a high and persistent fever that is not very responsive to normal treatment with paracetamol (acetaminophen) or ibuprofen. The fever may persist steadily for up to two weeks and is normally accompanied by irritability.

Kawasaki published the first English language report of 50 patients with Kawasaki disease in 1974. Since that time, KD has become the leading cause of acquired heart disease among children in North America and Japan. Although an infectious agent is suspected, the cause remains unknown. However, significant progress has been made toward understanding the natural history of the disease and therapeutic interventions have been developed that halt the immune-mediated destruction of the arterial wall.

Inflammation of the mucous membranes in the mouth, along with erythema (redness), edema (swelling) with fissures (cracks in the lip surface), desquamation (peeling) and exsudation of the lips become exceedingly evident. Rashes occur early in the disease, and the cutaneous rash observed in patients with KD is non-specific, polymorphic, non-itchy and normally observed up to the fifth day of fever.

Some of these symptoms may come and go during the course of the illness. It is a syndrome affecting multiple organ systems, and in the acute stage of KD, systemic inflammatory changes are evident in many organs.

If left untreated, some symptoms will eventually relent, but coronary artery aneurysms will not improve, resulting in a significant risk of death or disability due to myocardial infarction (heart attack). If treated in a timely fashion, this risk can be mostly avoided and the course of illness cut short.

Children with Kawasaki disease should be hospitalized and cared for by a physician who has experience with this disease. When in an academic medical center, care is often shared between pediatric cardiology and pediatric infectious disease specialists (although no specific infectious agent has been identified as yet). It is imperative that treatment be started as soon as the diagnosis is made to prevent damage to the coronary arteries.

Sources: The Journal of Pediatrics, and The Japan Heart Journal

Written by Sy Kraft