Kawasaki Disease: Our Journey, Insights on Diagnosis and Treatment Options, and Ways to Support the KD Community

“I think it’s Kawasaki Disease, Kawa – What?”

In 2007, I burst through the Emergency Room doors at the former St. Luke’s Hospital in San Francisco, clutching my four-month-old daughter, who was seizing. After days of distress over her high fever and irritability, I sought help from her pediatrician, who initially dismissed my concerns as teething. As a first-time mom in my early 20s, I wanted to believe this diagnosis, but my daughter’s worsening condition compelled me to seek emergency care.

Within moments, a compassionate nurse ushered us into the ER, where a team of doctors sprang into action, conducting tests. It was agonizing to see my baby in distress, yet I held onto hope for answers. When the doctor informed me that her tests were clear and likely indicated a virus, I insisted on staying overnight, fearing another seizure.

That night, my worst fears came true when she was diagnosed with intussusception [a life-threatening intestinal condition], necessitating an ambulance transfer to a specialized hospital. Fortunately, that diagnosis turned out to be incorrect, and surgery was unnecessary. Just before we were discharged, I noticed a rash on her. A resident doctor examined her and said, “I think it’s Kawasaki disease.” I responded, “Kawa, what?” She clarified, “Kawasaki disease, like the motorcycle,” confirming the diagnosis. After receiving two doses of Intravenous immunoglobulin (IVIG), she began to improve.

Facing the unknowns of Kawasaki disease (KD) and its potential recurrence, I decided to take action by researching and connecting with other families. I built a network of support and shared experiences, transforming anxiety into determination. This journey ignited a deep passion for knowledge and advocacy, proving that even in the darkest times, we can emerge stronger, turning fear into resilience and hope.

Since that pivotal moment, I have transformed memories of those challenging days into a steadfast commitment to the Kawasaki Disease Foundation’s (KDF) mission. We strive to fund lifesaving research, support families impacted by the disease, and raise crucial awareness. I’ve connected with many parents and families worldwide seeking emotional support or assistance in diagnosing their children.

Alarmingly, KD diagnoses continue to be overlooked, not only in under-resourced nations with awareness but also here in the United States. Parents navigating the emotional burdens of a challenging diagnosis like Kawasaki disease can rely on our trained support specialists through the KDF Bridges Program. For those seeking medical guidance, the KDF provides comprehensive information on Kawasaki disease and connections to specialists who facilitate clinician-to-clinician consultations to aid in the diagnosis and treatment of affected children.

Kawasaki disease is a critical illness that causes widespread inflammation of blood vessels and predominantly affects young children and infants, although people of all ages can be impacted.

Diagnosing KD poses challenges, as there is no definitive test; doctors must rely on a careful evaluation of the symptoms.

Key symptoms of KD include:

• Bloodshot eyes
• Rash
• Strawberry tongue
• Red, cracked lips
• Swollen lymph nodes in the neck
• Red palms and swollen hands and feet
• A persistent fever that does not respond to medication

Timely diagnosis and treatment within 10 days of symptom onset can lead to full recovery without lasting complications. Unfortunately, due to the complexities of identifying this disease swiftly, many patients remain undiagnosed or experience delayed treatment, which can result in severe heart damage that requires lifelong monitoring or even coronary artery complications.

Online AI Kawasaki Disease Screening Tool

For parents and caregivers trying to assess a potential case of Kawasaki disease, our newly developed AI tool offers a valuable resource to help determine if the symptoms align with KD. By simply uploading at least three photos of the symptoms their loved one is experiencing, users receive a recommendation to seek treatment based on the tool’s insights into KD symptoms. You can access this important tool here: https://screeningtool.kdfoundation.org/.

Treatment Options

Advancements in treatment options, such as the use of infliximab for patients with resistant KD who do not respond to IVIG treatment, have transformed care for many. Parents and clinicians navigating a resistant case of KD can learn more about infliximab here:
https://kdfoundation.org/treating-resistant-kawasaki-disease/.

Sharing your journey and knowledge about KD is not only a powerful way to process your own experiences but also benefits others grappling with a difficult diagnosis. Through my daughter’s experience, I’ve created a supportive community of KD parents, medical experts, and professionals committed to raising awareness and enhancing treatment options for future patients.

Join us in raising awareness for Kawasaki disease. January 26, 2025, marks National Kawasaki Disease Awareness Day, and you can make a difference by participating in our campaign, “Lights On, Hearts Strong.” Discover the many ways you can get involved by visiting www.kdday.org. Your participation can support families and strengthen the KD community. Together, we can make a profound difference in the fight against Kawasaki disease.

ABOUT THE AUTHOR

Vanessa Gutierrez is the president of the Kawasaki Disease Foundation, a 501(c)(3) nonprofit dedicated to advancing awareness and support for Kawasaki disease. As the first and longest-standing organization in the United States focused on this condition, the Foundation has made a significant impact, donating over half a million dollars to research, establishing an annual educational symposium, and designating January 26th as National Kawasaki Disease Awareness Day.

Under Vanessa’s leadership, the Foundation launched a program for Kawasaki Disease Youth (KDF Youth) and an annual Memorial Scholarship honoring Dr. Tomisaku Kawasaki. With over a decade of experience in public health and nonprofit work, Vanessa advocates passionately for better health outcomes for patients and diverse communities. In her free time, she enjoys traveling, hiking, and spending time with loved ones. To learn more about the Foundation’s mission and programs, visit kdfoundation.org.

Cover Image by Dream_ maKkerzz