Connecting Care to Those with Rare

Crash & Burn


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Each section is written by a member of KDF Youth. These amazing talented young people are a wealth of information and part of our rare family.

About This Blog - This blog post will delve into the stories of five youth from the Kawasaki Disease Foundation Youth Team in order to raise awareness about Kawasaki disease to the Rare Strides® community and beyond and help educate on its possible symptoms in CRASH AND BURN. 

About This Blog

This blog post will delve into the stories of five youth from the Kawasaki Disease Foundation Youth Team in order to raise awareness about Kawasaki disease to the Rare Strides® community and beyond and help educate on its possible symptoms in CRASH AND BURN. 

Introduction To Kawasaki Disease

(Ellen)

Kawasaki disease is the number one acquired heart disease in children in the United States and Japan; 6000 are diagnosed with the disease per year, a vast majority of patients are children between 1 to 4 years old, and 25% of patients develop coronary artery aneurysms, a fatal heart disease, as a result when not caught by diagnosis. It is characterized by an inflammation of the blood vessels throughout the body, and this can lead to long-term damage and heart disease if left untreated within the first 10 days. The most dangerous problem related to Kawasaki disease is the threat of vasculitis, blood vessel inflammation, which causes interference with the heart’s blood supply, even to the point of causing a heart attack in a young child. Despite research by Kawasaki Disease doctors and researchers, the exact cause of Kawasaki disease is yet unknown. Due to the short time frame of about 10 days for effective treatment, it is crucial for the disease to be identified and diagnosed as soon as possible; however, the rarity of the disease and wide range of symptoms make it difficult to diagnose. 

Described by Dr. Tomisaku Kawasaki in 1967, patients often display physical signs of Kawasaki Disease which can be critical to early detection of the disease and diagnosis. The disease has typical symptoms of Conjunctivitis (pink eye), Rash, Adenopathy (swollen lymph nodes), Strawberry tongue, Hands and feet swollen and peeling, and a high fever. These common Kawasaki disease symptoms are commonly referred to in the mnemonic “CRASH AND BURN,” although atypical cases of Kawasaki disease in patients may arise without a full set of symptoms and only 3 out of the 5 physical symptoms are needed to make a diagnosis. 

Conjunctivitis (pink eye)

(Ellen) 

Conjunctivitis, otherwise known as pink eye or “bloodshot” eyes, is the inflammation of the membrane surrounding the eye, and is present in greater than 90% of patients with Kawasaki disease. It often occurs in both eyes and begins within days of the start of the fever. Conjunctivitis is one of the common symptoms of Kawasaki disease and can be a crucial part of making a diagnosis. 

As members of the Kawasaki disease youth team, many of our members or family members have had conjunctivitis as a symptom during the acute Kawasaki disease phase. We hope to share our stories through the following six symptoms in CRASH AND BURN and highlight the importance of every one of these Kawasaki disease symptoms, starting with conjunctivitis.  

Rash (Ellen)

My younger sister was diagnosed with Kawasaki Disease, a serious inflammatory heart disease, when she was only 3 years old. Although she was lucky enough to have received treatment from one of the best Kawasaki disease facilities right in at UCSD Kawasaki Disease Research Center, diagnosing her disease was not an easy path. She was misdiagnosed the first time, and the disease symptoms were mistaken to be just a coincidence. But as her symptoms gradually got worse, it became apparent that her sickness was no ordinary flu. As well as the other typical symptoms of Kawasaki Disease, one of the key symptoms she had was a red rash over much of her body, including her stomach and back. A Kawasaki disease rash was one of the key pieces to why my mom believed my sister had been misdiagnosed, and subsequently brought her to the hospital again, where her pediatrician had luckily seen the disease earlier in his career and was able to properly diagnose her. 

My sister was diagnosed with Kawasaki disease on the 5th day, in the effective treatment window of 10 days until the chances of getting fatal chronic heart diseases become very high. Since then, she has undergone treatment and recovered from the disease, and lives healthily and happily to this day. I am endlessly thankful that my sister was able to be properly diagnosed and treated, but I know that many other families are not as lucky. I hope to raise awareness through serving as a team lead at the KD Foundation Youth Team and help other KD families and communities. 

Section-Adenopathy (Lymph Nodes) 

(Brooke)

When I was four years old, I developed severe neck pain as well as migraines after a standard family trip to Disney World. My family passed it off at first as a virus. My mom became concerned as I kept needing to come home from preschool early and was not acting my typical self. She said that one day she decided to feel my neck, and described it as having two “hard rocks” where my lymph nodes were located.  My mom knew something was wrong, and she took me to a variety of specialists and pediatricians. Headaches and neck pain are symptoms of many different illnesses, so I was misdiagnosed many times with Strep Throat, inflammatory diseases, and even juvenile arthritis. She was convinced these diagnoses were not the answer. As time went on, I began to develop other KD symptoms such as extreme skin peeling, a rash, and a strawberry tongue. On Day 9, my mom decided to put her foot down and not let me get discharged from yet another hospital. The hospital decided to run some more tests and gave me my first echocardiogram. They noticed that one of my major arteries was critically inflamed. However, they still had no idea what caused it. They suggested open heart surgery, but my mom still had a gut feeling was something more going on. On Day 10, a specialist was at the hospital and luckily was able to look over my file. He then finally diagnosed me with Kawasaki Disease. I was immediately started on IVIG, as KD is a time-sensitive disease with a 10-day window. Doctors describe my case as atypical for KD, because I required two rounds of IVIG instead of the standard one and experienced a few rarer symptoms that made the disease harder to catch. I stayed in the hospital for about two more weeks while I was being monitored and given Aspirin. After that, I was discharged and luckily have no serious damage to my heart. I started getting echocardiograms every year, but now I am doing so much better and only need them every few years. My experience with KD has taught me perseverance not only physically, but if you think something is wrong, keep asking questions. Trust your gut. However, I do think it is a good story for medical workers to hear. There are truly so many rare diseases out there that go unspoken. Awareness is so important for all rare diseases.  

Section- Strawberry Tongue (Anika)

When I was five years old, I developed a fever and other typical Kawasaki Disease symptoms that lasted multiple days. Having been diagnosed with typhoid only the previous year, my parents were naturally cautious and chose to immediately consult a pediatrician, however, the pediatrician first consulted misdiagnosed Kawasaki Disease for common tonsillitis and prescribed medication for tonsillitis and rash. However, despite taking the medication, my symptoms did not subside, which made my mom take a second opinion just to make sure. The second pediatrician we consulted was able to appropriately diagnose Kawasaki Disease, and was even shocked by it considering how rare the disease is and ran the necessary tests to confirm that it was indeed Kawasaki Disease. My diagnosis was only confirmed on the tenth day from the onset of fever, which made time especially crucial in ensuring appropriate treatment of the disease to prevent further physiological complications, since doctors consider a 10-day window from the onset of fever as the time window during which treatment must be started in order to prevent any further complications. Throughout my journey with Kawasaki Disease, the strawberry tongue symptom stuck with me because although I presented all other symptoms as well, the strawberry tongue was the crucial one that convinced the pediatrician that this was Kawasaki Disease. Furthermore, the most observable change after I left the Intensive Care Unit (ICU) after the IVIG (intravenous gamma globulin) treatment was that my tongue was no longer swollen and red.  I want my experience with Kawasaki Disease to show how even despite having textbook symptoms of Kawasaki Disease – fever, conjunctivitis, rash, swollen tonsils, strawberry tongue, and swollen hands – I was still misdiagnosed due to the lack of awareness regarding Kawasaki Disease, even in medical communities, making it even more important for the general public and our future leaders, our youth, to be aware of the disease.  

Hands and Feet Swollen and Peeling (Bella)

When I was 4 months old and diagnosed with KD, one of the symptoms was that my hands and feet were swollen, and I had peeling skin. The first thing that was swollen was my stomach, then my hands and my feet were swollen. In addition, I had bloodshot eyes and my feet peeled after I had treatment. My gallbladder was swollen so I was put on liquids to be able to eat. Some of the people who had KD had some heart defects or side effects afterwards. I was lucky enough to not have any side effects and have been completely fine since then. I would get a check every 3 to 5 years, but since I don’t have any current issues I don’t need to get a check. When I had KD I had it for about 10 days, the first thing my mom noticed was having a fever. It took about 12 doctors to diagnose me for KD. We do not know how it was caused till this day.  Our goal for the KDF Youth Board is to raise awareness for KD and for more people to know about this rare disease. We are mostly trying to get the youth to know more about KD so they know if they may have it or a family or friend. We are trying to get noticed and to make this rare disease more known and less rare. 

Fever (Adriana)

When I was 8 months old, I developed high fever at 41°C and became highly irritable – and as a relatively calm child, this raised some red flags for my parents. Kawasaki Disease is relatively rare in my country, and because I hadn’t developed other typical symptoms of KD – such as strawberry tongue, adenopathy, peeling skin – diagnosis was extremely difficult. My parents jumped from physician to physician, who all claimed that I had a mild case of pneumonia. However, the last pediatrician my parents reached out to, who works at Hotel Dieu in Lebanon, worked long and hard for 3 days until it hit him. He was a former KD patient himself, and suspected that KD was what I was suffering from. I went through all the necessary tests to confirm it, and it came out positive – I was then labelled a KD patient, and my diagnosis occurred 4 weeks into the disease so treatment was needed urgently. My fever was still high at that time and I had begun to develop the rash which is characteristic of the majority of KD patients. My arteries were abnormally structured, and I was immediately given doses of IVIG (intravenous gamma globulin) and prescribed a life-long dose of Aspirin, which I still take today. Luckily, I recovered extremely quickly and was discharged from the hospital with no post-KD physiological consequences, and my recent angiogram shows that my heart has completely recovered from the disease. My personal experience and recent angiogram shows me how important an increased awareness of the disease is when it comes to early diagnosis and propelled me to join the KDF Youth team to support its cause! 

Conclusion (Ellen) 

We hope our stories can shine a light upon the dangers of Kawasaki disease if gone misdiagnosed or underdiagnosed and help raise awareness within are communities about the signs of Kawasaki disease. As a KD Foundation Youth Team, we especially want to educate the younger population and generate awareness through mobilizing youth and initiatives targeting the next generation. 

January 26, 2021, is National Kawasaki Disease Awareness Day, and we hope you will join us in raising awareness for Kawasaki disease and its symptoms through raising our voices and speaking out for change! https://kdfoundation.org/kddayfundraiser . On the KD Foundation website kdfoundation.org, there are many more resources for learning more about Kawasaki Disease, supporting the community, or ways to get involved and help further research. 

In addition, we are looking for youth teens between the age of 13-18 to help us in our cause. Find us at @kdfyouth on Instagram and Tiktok, and the KD Foundation on Youtube or at our website https://kdfoundation.org/kdfyouth/ . We are looking forward to fighting Kawasaki disease with your help and support! 

Thank you for reading our blog post and taking the time to learn more about Kawasaki disease. We greatly appreciate Rare Strides® for giving us this opportunity to share our stories and bring together a community to together, help fight rare diseases.