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KDF News
The heartbeat of the Kawasaki Disease Foundation
Fall 2013
Volume 2, Issue 1

KDF News

The heartbeat of the Kawasaki Disease Foundation

Fall 2013
Volume 2, Issue 1



Table of Contents:


A Letter From The Editor

Fall 2013
Dear KD Friends and Families,

 
Many exciting things have happened in our KD community since the last issue of the newsletter was published!

As many of you know, Sarah Chalke appeared on Grey’s Anatomy last spring in an episode that featured a young child with KD. Since that episode, Sarah has been working with the Foundation and Dr. Jane Burns at UCSD, in an effort to raise funds for a diagnostic test for KD. Through the website crowdrise.com and also the Crowdrise “Start a Ryot” Challenge, Sarah has helped to raise approximately $245,000! She’s also made various appearances on television and has been able to fundraise that way, as well as raise awareness for KD. We thank her from the bottom of our hearts for her effort and support.

Additionally, new studies have been published by Dr. Jane Burns that declares that there is a definitive link between wind currents and Kawasaki Disease, as well as that there is a “KD season”, which occurs in January through March. You can read an article on the studies findings in this issue of the newsletter.

Dr. Burns also conducted a study of KD patients who have gone on to have children. I personally took part in this study last year, and am anxious to see the published study.

Be sure to check out the calendar page in this issue for upcoming KD fundraising events and symposiums, including the October 19th symposium in Seattle, and the 5th Annual “To Save A Child’s Heart” gala event in La Jolla on November 9th!

Sincerely,
Kate Dávila
KDF Newsletter Editor
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KD Families: Their Stories

Sarah and Charlie

 

Actress Sarah Chalke has recently gone public with her son’s experience with Kawasaki Disease. In the spring of 2013, she appeared on an episode of Grey’s Anatomy as a parent whose child had a mystery illness that later turned out to be Kawasaki Disease. The title of the episode, “Can’t Fight This Feeling” was appropriate as not only was the premise of the case in the show where a mother is insisting there's something more going on with her child, but this also echoes Chalke’s own experience with KD, as well as many KD parents.

We had the opportunity to speak and she agreed to share her thoughts and KD experience, as well as why she credits the KD Foundation website with saving her son’s life, and her fundraising efforts for a diagnostic KD test.

Q: How did your son’s illness start?

On the first day, he had a very distinctive red solid rash around his mouth that looked kind of like a mask. He had a fever and rashes on his bottom and behind his knee.

Q: What were your son’s symptoms?

His symptoms included rashes all over his body, red eyes that came, then went, then came back; lips that were at some points cherry red, at some points cracked, nausea, sometimes unable to eat or drink, dehydration, fever for 7 days, lethargy; one day of listlessness, purplish red swollen palms and feet, fluid around his heart, what seemed like joint pain, (he was fussy, crying, kicking his legs out in pain), and he had peeling fingers.

Q: What was he diagnosed with before KD?

His misdiagnosis included allergic reaction, virus, Adenovirus and Scarlet Fever.
The KD Foundation website is what kept us fighting to see a specialist. It so clearly listed the symptoms and he had all of them. Our pediatrician told us it wasn’t KD, and an emergency room doctor told us it wasn’t KD. We finally got to see a specialist on day ten. Some of my son’s symptoms were gone by this point but we brought photos and videos of him at his sickest. The specialist listened to our story, looked at the photos and the videos, and diagnosed him with KD. He said “a picture is worth a thousand words, thank god you took them. I am diagnosing him off of these photographs.” He was diagnosed on day 10 after seeing a specialist, and given IVIG treatment.

Q: What is the key thing you would pass on to parents?

One of the things I tell every parent I know is take pictures of your kids when they’re sick. It feels so counter-intuitive to do so, but it’s so much easier to show a picture of a rash than to try to describe it. It’s been a little embarrassing on more than one occasion when I’ve gone to show someone a picture of my son on my phone and shown a medical photo instead!

Q: How long after receiving treatment did he return to his normal self?

Some of his symptoms were gone by the time he received the IVIG. The skin on his fingers peeled away over the next little while.

Q: Does he have any lasting effects?

None that we know of. We just had his 2 year echocardiogram and it was clear. I can’t really put in to words how lucky we feel
. Because there is little known about the long term effects of KD, he will have an echo every 3-5 years.

Q: Why do you feel it’s important to educate people about KD through shows like Grey’s Anatomy?

Because KD is so commonly misdiagnosed, an episode of Grey’s Anatomy where you could show the symptoms, so many of which are so visual, seemed like a great way to raise awareness. The show included a PSA at the end for the KD Foundation. I also really wanted to get a message across to parents that whether it was KD that their child had or if it was something else, to trust their instincts. As a parent, that’s all you’ve got. And you know your kid. Trust your gut and don’t be afraid to advocate for your kid.

Every day that I went back into my doctor’s office after I was repeatedly told it was not Kawasaki Disease, I was out of my comfort zone. But the KD foundation website kept me going.

Q: What was the experience like to shoot the episode of Grey’s Anatomy?

I’m usually excited to go to the first day of work on a new job, but I was nervous about what the experience would be like. What would it be like to see a child who was made up to look as if they had KD? And then the morning we started shooting, I found out that they had cast triplets to play my son and one of the triplets had KD a year ago. The casting department didn’t know when they had cast the triplets, and the mother didn’t know it was about KD when she had accepted the part. A pretty remarkable coincidence and one that gave me the confidence to go and do the first scene. I felt if one parent saw the episode, and could help one child’s heart, it would be more than worth it. After the episode aired, I received a letter from a mother whose child had KD and was being misdiagnosed. Her sister in law had seen the episode of Grey’s and told her about KD. The mother kept fighting for her child after being misdiagnosed multiple times, and was finally diagnosed with KD. She wrote to say thank you.

Q: Why is it important to you to participate in fundraising efforts?

It is so important to me. The doctors are so close to solving so many of the mysteries of KD and we need to work together to help them get there. On that note, there is a very exciting new development. A team of doctors at Stanford University and UCSD has just devised a prototype for a diagnostic test. This is a huge deal. A diagnostic test that could be 95% accurate.

When my son had Kawasaki disease, and we thought that’s what it was and doctors and hospitals were telling us it wasn’t, I can’t tell you how many times I said, “I just wish there was a test. A test that could just tell us if this is KD.”

And now there might be. It needs to be tested for two years before it can be used. This will cost $300,000. In July, I started a Crowdrise campaign to begin the fundraising for this.
Thanks to a very generous $100,000 match from the Gordon and Marylin Macklin Foundation, to date, we’ve raised $245,000! If you would like to donate to our campaign, please click on the link here to join me…www.crowdrise.com/sarahchalke

Q: Is there anything adult KD survivors should know?

Yes, another thing we're trying to raise awareness about is the adult KD survivor study. There is little information known about the long term effects of Kawasaki Disease, whether there were coronary aneurysms or not. Email Dr. Jane Burns at Adultkd@ucsd.edu if you're willing to be part of the study.

Q: Why did you feel it was important to participate in the KDF Gala last November in San Diego when you hadn’t made it public before that your son had KD?

The illness, the diagnosis and waiting for the results were a difficult experience and took me a while to recover from and to feel ready to speak about it. I was galvanized by the KDF Gala and moved by hearing other parents tell their stories. Before the Gala, I hadn’t met another parent whose child had KD or a KD survivor. And then I met many families whose children had coronary aneurysms. I felt like I wanted to do something immediately to raise awareness. I met with Grey’s Anatomy a couple weeks later, and fortunately they decided do an episode right
away.

Sarah will continue her fundraising and awareness efforts as the honorary chair at the “To Save A Child’s Heart” gala on November 9, 2013 in La Jolla, CA. For more information about this event, please visit www.kdfgala.org



Visit Sarah Chalke's KD Challenge on Crowdrise by clicking here

Donate in any amount or create your own team to fundraise with Sarah for the KD Foundation!



 
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Kawasaki Disease Foundation "To Save a Child's Heart" Gala
Saturday November 9, 2013

La Jolla, California at The Torrey Pines Hilton

Hilton La Jolla Torrey Pines
10950 North Torrey Pines Road
La Jolla, CA 92037

 


 

The Hilton has extended us a discounted rate if you wish to stay overnight.  Click here to get the discount.

Gala ticket prices: $300 / seat, $400 / VIP

VIP: A preferred seat during the dinner. VIP cocktail hour where you will enjoy a specialty drink of the evening and be entered in the drawing to be a guest judge for a mini "Chopped" (mystery basket) competition between 2 of the attending chefs. There will also be hors d'oeurves provided by a few celebrity chefs plus a meet and greet.

Table sponsor tickets: See this PDF download for sponsorship options.

Agenda:

5:00pm - VIP
5:30pm - Cocktail/Auction reception
7:00pm - Dinner

Music and dancing following dinner program.

If you have questions, please contact:  info@kdfoundation.org

To purchase tables, please email kdfgala@gmail.com or contact Jenn Phillips at (858) 688.8292.

To purchase your tickets please click here:

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KD Medical
News


Data from Across Globe Defines Distinct Kawasaki Disease Season

Further evidence that long-range wind transport of an infectious agent might result in human disease


After more than four decades of research, strong evidence now shows that Kawasaki disease has a distinct seasonal occurrence shared by regions across the Northern hemisphere.

The first global analysis of the seasonality of Kawasaki disease, published September 18 by PLOS ONE, was carried out using data obtained between 1970 and 2012. It included 296,203 cases from 39 locations in 25 countries around the globe, with 27 of those locations in the extra-tropical Northern hemisphere, eight in the tropics, and four in the extra-tropical Southern hemisphere.

Kawasaki disease (KD) is a severe childhood disease that many parents, even some doctors, mistake for an inconsequential viral infection. In fact, if not diagnosed or treated in time, it can lead to irreversible heart damage. Decades of research have been unable to pinpoint the cause of the disease, although genetic studies show a heritable tendency to acquiring the disease.

Findings of an international team of scientists - organized by Jane C. Burns, MD, professor of pediatrics and director of the Kawasaki Disease Research Center at the University of California, San Diego School of Medicine and Rady Children’s Hospital-San Diego – now support earlier evidence that KD cases are linked to large-scale wind currents that track from Asia to Japan and also traverse the North Pacific.

The study found that 40 percent more cases of Kawasaki disease in the Northern hemisphere occurred from January through March than from August through September – coinciding with high and low intensities of tropospheric winds. Previous studies showed that when winds blew from the northwest across Japan in a southeasterly direction, the number of KD cases there increased. At the conclusion of the epidemics, the wind had reversed direction and commenced blowing across Japan from the Pacific Ocean in a northwesterly direction. This same pattern was repeated from year to year.

The passage of these large-scale wind patterns across the Pacific was similarly associated with an increase in KD cases in San Diego, California.

This study built and expanded upon earlier research investigating a possible influence from large-scale environmental factors, (published by this scientific team in a November 2011 study in Nature Scientific Reports) by a team of researchers that also included two contributors to this study: Daniel R. Cayan, Climate Atmospheric Science and Physical Oceanography (CASPO) at Scripps Institution of Oceanography in La Jolla, and Xavier Rodó of the Institut Català de Ciències del Clima and the Institució Catalana de Recerca (IC3) in Barcelona, Spain.

“Our data suggest a seasonal exposure to a KD agent that operates over large geographic regions and is concentrated during winter months in non-tropical regions of the Northern hemisphere,” Burns said.

Datasets were much sparser in the tropics and the Southern hemisphere, but showed a maximum incidence in May through June, with approximately 30 percent of the cases occurring in that time period; however, the pattern was not considered statistically significant.

“During winter months, there are stronger seasonal winds across the Northern hemisphere, which could lead to increased transport of the suspected KD agent,” said Burns. “This may explain, in part, the consistency in the seasonal nature of Kawasaki disease that we observe in our pediatric patients.”

While there is no diagnostic test, signs of KD include prolonged fever associated with rash, red eyes, mouth, lips and tongue, and swollen hands and feet with peeling skin. The disease causes damage to the coronary arteries in a quarter of untreated children and may lead to serious heart problems in early adulthood. The aneurysm rate for Kawasaki disease is 5 percent, and the death rate is 0.1 percent.

While seasonality of the disease has been noted in many regions – particularly in Japan, the country of highest incidence for KD – the search for factors that might contribute to epidemics and fluctuations in KD occurrence has been elusive. A study of KD cases in Japan since 1970 showed three dramatic nationwide epidemics, each lasting several months and peaking in April 1979 (6,700 cases), May 1982 (16,100 cases) and March 1986 (14,700 cases). These three peaks represent the largest KD epidemic events ever recorded in the world.

Previous epidemiological investigations suggest that the causative agent for KD is widely distributed in the environment, that there is no person-to-person transmission and that genetic susceptibility plays a part in at least some of the disease variation across different ethnic and racial groups. Japan continues to be the country of highest incidence, but seasonality of the disease has been documented in Hawaii and San Diego as well.

The scientists report that this recent comprehensive analysis to detect seasonal cycles of KD cases from around the world could be significant in efforts to isolate the cause of this devastating childhood disease.

Additional contributors to the study include Lauren Herzog, BS, Olivia Fabri, and Adriana H. Tremoulet, MD, MAS, UC San Diego and Rady Children’s Hospital-San Diego; Ritei Uehara MD, PhD, Jichi Medical School, Tochigi, Japan; David Burgner, MD, PhD, Murdoch Children’s Research Institute, The Royal Children’s Hospital, Parkville, Victoria, Australia; Emelia Bainto, BS, David Pierce PhD, and Mary Tyree, MS, Scripps Institution of Oceanography, UC San Diego.

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Top 10 Tips to Help Children Develop Healthy Habits

You can help your child develop healthy habits early in life that will bring lifelong benefits. As a parent you can encourage your kids to evaluate their food choice and physical activity habits. Here are some tips and guidelines to get you started.

1. Be a good role model - You don’t have to be perfect all the time, but if kids see you trying to eat right and getting physically active, they’ll take notice of your efforts. You’ll send a message that good health is important to your family.

2. Keep things positive - Kid’s don’t like to hear what they can’t do, tell them what they can do instead. Keep it fun and positive. Everyone likes to be praised for a job well done. Celebrate successes and help children and teens develop a good self-image.

3. Get the whole family moving - Plan times for everyone to get moving together. Take walks, ride bikes, go swimming, garden or just play hide-and-seek outside. Everyone will benefit from the exercise and the time together.

4. Be realistic - Setting realistic goals and limits are key to adopting any new behavior. Small steps and gradual changes can make a big difference in your health over time, so start small and build up.

5. Limit TV, video game and computer time - These habits lead to a sedentary lifestyle and excessive snacking, which increase risks for obesity and cardiovascular disease. Limit screen time to 2 hours per day.

6. Encourage physical activities that they’ll really enjoy - Every child is unique. Let your child experiment with different activities until they find something that they really love doing. They’ll stick with it longer if they love it.

7. Pick truly rewarding rewards - Don’t reward children with tv, video games, candy or snacks for a job well done. Find other ways to celebrate good behavior.

8. Make dinnertime a family time - When everyone sits down together to eat, there’s less chance of children eating the wrong foods or snacking too much. Get your kids involved in cooking and planning meals. Everyone develops good eating habits together and the quality time with the family will be an added bonus.

9. Make a game of reading food labels - The whole family will learn what’s good for their health and be more conscious of what they eat. It’s a habit that helps change behavior for a lifetime.

10. Stay involved - Be an advocate for healthier children. Insist on good food choices at school. Make sure your children’s healthcare providers are monitoring cardiovascular indicators like BMI, blood pressure and cholesterol. Contact public officials on matters of the heart. Make your voice heard.

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Heart Healthy Recipes


Life is busy! Between kids, work, friends and all that life has to offer, sometimes having a healthy meal is impossible! With kids who have had Kawasaki Disease, eating “heart healthy” is important, even if they didn’t sustain heart damage. We’d like to feature a heart healthy recipe that you (and your kids!) could try out. If you have a recipe you’d like to see featured, please send it to the editor.



Spanish Tacos
Originally featured on the American Heart Association website
Serves: 4; 2 tacos per serving
Cooking Time: 19 - 22 minutes

Filled with shredded chicken simmered in tomato-based mixed-vegetable juice seasoned with turmeric, these tacos are a delicious alternative to the traditional Mexican version.

  • 1 1/2 cups low-sodium mixed-vegetable juice
  • 3 medium garlic cloves, minced
  • 1/2 teaspoon ground turmeric
  • 1/4 teaspoon salt
  • 1/4 teaspoon pepper
  • 4 boneless, skinless chicken breast halves (about 4 ounces each), all visible fat discarded, halved lengthwise
  • 8 6-inch yellow corn tortillas
  • 1 medium tomato, seeded and diced
  • 1/2 medium avocado, diced
  • 3 ounces white cheese, such as queso fresco, crumbled

In a medium nonstick skillet, stir together the juice, garlic, turmeric, salt, and pepper. Add the chicken. Cook over medium-high heat for 2 minutes, or until the juice comes to a boil. Reduce the heat and simmer for 10 minutes, or until the chicken is no longer pink in the center, turning over once halfway through.

Remove the skillet from the heat. Let the chicken and juice sit for about 2 minutes, or until the chicken is cool enough to handle. Transfer the chicken to a cutting board. Using two forks, shred the chicken. Return it to the skillet. Bring to a simmer over low heat. Meanwhile, warm the tortillas using the package directions. Spoon the chicken down the center of each tortilla. Top with the tomato, avocado, and cheese. Fold the sides of the tortillas over the filling.

Queso fresco is a soft white cheese that is moist and mild. It crumbles well, making it perfect for topping enchiladas, tacos, and other Mexican dishes. Check larger supermarkets and specialty markets for queso fresco, but if you don’t find it, try crumbled farmer cheese, soft goat cheese, or fat-free feta cheese or shredded low-fat Monterey Jack.


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Meet Your KD Foundation Board Members


Name: Kate Davila, Seattle, WA

What is your connection to KD?

I had KD in 1993 when I was 15 years old. Due to the fact that I was an older KD kid and very little was known about KD in the US, I wasn’t diagnosed until after Day 10. After a dose of IVIG, I was feeling better, but was left with multiple “giant” aneurysms, ranging from 8mm-13mm in size. Since I was 19 years old, I have had 4 small heart attacks (non-damaging), but have also had two healthy pregnancies resulting in two healthy children.

I currently take Coumadin, a beta blocker, and aspirin daily. While I was pregnant, I stopped the Coumadin and had twice daily injections of Lovenox. With both of my children, I had c-sections, and with both of them, despite having been hospitalized two days prior each time, I ended up with internal bleeding. With my first c-section, I actually ended up with an arterial bleed and had to have a second surgery to fix the issues. With my first c-section, I had 3 blood transfusions and with my second c-section I had 2. Fortunately, I came out of each procedure fine, and now have two very healthy kids – Santiago who is 3.5 and Gabriela who is 20 months old.

How long have you been involved with the KD Foundation?

I actually attended the very first parent symposium at Boston Children’s Hospital over 10 years ago when I was 21. I joined the board about 6 years ago.

What are you most passionate about when it comes to the KD Foundation and KD research?

Because of my experiences with pregnancy after KD, I’m passionate about spreading the word about it being safe to have children after KD. I recently participated in the pregnancy study that Dr. Jane Burns is conducting at UCSD, and am excited to read the paper when it’s published.

What are you most anxious about when it comes to your “KD kid(s)/yourself as a KD survivor?

Knowing that there is the very real possibility of bypass surgery in my future and how it will not only affect my life, but my family’s as well.

I’m also concerned about the genetic predisposition and worry about my children’s chances (and their children, etc.) of getting KD.

Where would you like to see KD research be in 10 years time?

I would love for there to be a diagnostic test, and for it to be very simple to diagnose KD and treat it. I’d love for the cases to decrease, and those that arise to be treated within the infamous “10 day window” to lessen the chance of heart issues.

I’d also love for there to be more information about KD survivors and how having KD, with or without heart damage, can affect survivors as adults.

Any other information you’d like to share?

I was given advice when I was first diagnosed by Dr. Jane Newburger at Boston Children’s Hospital that I took to heart and have followed since way back then. She told me to remain active (non-contact sports due to the Coumadin) and that the more active I am, the better chance I have of prolonging bypass surgery.

Throughout high school I was involved in cross country running and cheerleading, and in college, I cheered for a year, and was also at the gym 3 times a week. Since having my first child, I took up running again, and actually ran until I was 7 months pregnant with my second child. I also belong to a mom’s workout group (called Stroller Strides) with which I work out 3 times a week and take barre classes, as well as instruct barre a few times a week. In June of 2012, I completed my first half marathon, and have run a few 5k’s since then as well. I’m always active, as it’s best for me and my heart, but I love the example I’m setting for my two children (who now love to do pushups and sit ups with me!)

Listening to my body is key though. I know a lot of parents who have said their KD kids were told no exercise, because their cardiologists were afraid that the kids would push themselves past their limits. I think if you are active with your kids, you can help them learn to recognize the signs their body is sending them, and then teaching them to back off when they are tired is important.


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Kawasaki Disease Foundation
Calendar of Events

If you have an event that you would like to add to the calendar, please email it to editor@kdfoundation.org

October 19, 2013 – Kawasaki Disease Parent Symposium, 1pm – 5pm, Seattle Children’s Research Institute, 1900 9th Avenue, Seattle, WA. For more information: miriam.silva@seattlechildrens.org or call 206-884-5153

November 9, 2013 – Kawasaki Disease Parent Symposium, 9am-12pm, Telemedicine Building Auditorium at UC San Diego, 9500 Gilman Drive, La Jolla, CA

November 9, 2013 – 5th Annual “To Save A Child’s Heart” Gala (Celebrity chefs cooking for KD to benefit The KD Research Center at UC San Diego and Rady Children’s Hospital San Diego), Hilton La Jolla Torrey Pines

January 26, 2014 – Kawasaki Disease Awareness Day! Start thinking about this day now and plan something for your area! Send in information about your events to the Foundation via email or our Facebook page and we can help you promote it!

 
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Board Members

Greg Chin, President
Ipswich, MA

gregchin@kdfoundation.org

Merril Chin
Ipswich, MA

merril@kdfoundation.org

Kate Dávila
Bothell, WA

katedavila@kdfoundation.org

Catherine Frank
Havertown, PA

catherinefrank@kdfoundation.org

Monica Goss
Grand Haven, MI

monicagoss@kdfoundation.org

Vanessa Gutierrez
Daly City, CA

vanessa@kdfoundation.org

Jennifer Phillips
Rancho Santa Fe, CA

jenn@kdfoundation.org

Lynda Moore
Lake Ridge, VA

lyndamoore@kdfoundation.org

Comischell Rodriguez
Del Mar, CA

comischell@kdfoundation.org


Do you have suggestions for upcoming newsletter articles?
Would you like to have your or your child’s KD story include?
Please send the information via email to editor@kdfoundation.org



Join us in our race for an answer: our urgent goal is to research for answers and raise awareness of Kawasaki Disease.


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