The Grey Seeker: January 2014

Sunday, January 26, 2014

26 Days of Kawasaki Disease Awareness: Day 26

It's finally here! January 26, 2014 - the 4th annual Kawasaki Disease Awareness Day. Thanks to everyone who joined me in this 26 day endeavor and to everyone who spreads KD awareness in their own way. During the last month, I have been posting ideas that can raise awareness for KD.

Here are the past days:

Day 1: Help make 'National Kawasaki Disease Awareness Day' officially recognized at the local, state, and national levels.
Day 2: Create an email signature to promote Kawasaki Disease awareness.
Day 3: Organize an art contest.
Day 4: Pass out KD awareness posters.

Day 5: Write about your Kawasaki Disease experience.

Day 6: Contact news outlets about running a KD story.
Day 7: Decorate your home and car windows with KD awareness.
Day 8: Participate in a KD Clinical Study
Day 9: Share Kawasaki Disease themed infographics and memes.
Day 10: Organize a 5K run for Kawasaki Disease.
Day 11: Get your community involved in KD awareness.
Day 12: Hand out heart lollipops with KD information.
Day 13: Start or join a Kawasaki Disease support group.
Day 14: Buy, make, and wear KD awareness.
Day 15: Organize a charity golf or mini-golf tournament for KD.
Day 16: Organize a local blood drive for KD and donate blood.
Day 17: Get your child's school involved.
Day 18: Make a KD inspired float for a local parade.
Day 19: Organize a charity sporting event for KD.

Day 20: Donate $26 on January 26th and urge others to do the same.
Day 21: Get your public library involved in KD awareness.
Day 22: Get your religious and non-religions organizations and clubs involved.
Day 23: Attend a Kawasaki Disease Parent Symposium.
Day 24: Help a Kawasaki Disease Survivor with their very own awareness campaign or fundraiser.
Day 25: Make a Kawasaki Disease awareness inspired wreath.

So let's get to the final idea of "26 days of Kawasaki Disease Awareness."

Day 26: Share Kawasaki Disease Facts.

If we are going to spread KD information, we need to strive to spread current, factual information. Many of the following KD facts are more well known, others may not be so wide spread. It is crucial to remember that many of these facts come from a variety of different sources and all will be linked to where I originally found the information. All facts should be considered based on the context of the article that contains it.

26 Kawasaki Disease Facts, in no particular order:

#1) Kawasaki Disease is the #1 cause of acquired heart disease in children, worldwide.

#2) Although many theories exist, it has not yet been proven what exactly causes Kawasaki Disease.

#3) 75% of people who are diagnosed with KD are under 5 years of age.

#4) There is no diagnostic test for Kawasaki Disease; it is diagnosed by ruling out other illnesses through diagnostic tests and a thorough history and physical.

#5) To be diagnosed with KD, you have had a fever for at least five days and show at least 4 out of these 5 symptoms: rash; swollen lymph nodes in the neck; swollen, chapped lips and a strawberry tongue; swollen hands and feet with red palms and/or soles; and bloodshot eyes.

#6) Approximately 25% of KD cases will present as Incomplete Kawasaki Disease, where less than four of the principal features are present but laboratory results or echocardiography suggests the diagnosis of KD.

#7) Number of children <5 diagnosed with KD each year, broken down by country (and rounded to the nearest whole number):

Japan - 220 per 100,000
Korea - 113 per 100,000
Taiwan - 69 per 100,000
Canada - 26 per 100,000
United States - 19 per 100,000
Australia - 10 per 100,000
England - 8 per 100,000

#8) If left untreated, Kawasaki Disease will lead to coronary artery aneurysms in 25% of cases.

#9) Children with Kawasaki Disease have a higher risk of developing atopic dermatitis (eczema) than healthy controls.

#10) Parents whose children have had KD reported a higher proportion of anxiety issues, allergies, and orthopedic/bone/joint issues in their children than did the general US population sample.

#11) Dr. Tomisaku Kawasaki first saw the illness known later as Kawasaki Disease in 1961. He wrote his first Japanese-language report on KD on 1967 and his first English-language report in 1974.

#12) The first cases of Kawasaki Disease to be recognized in the United States were in Hawaii in the early 1970s.

#13) Most coronary artery aneurysms resulting from Kawasaki Disease are small to medium in size and 50-67% of small-medium CAA's will regress back to normal size within 1-2 years.

#14) Several lines of evidence suggest that regressed CAA may be at risk for some long-term complications, particularly accelerated atherosclerotic disease.

#15) The American Heart Association and the Japanese Ministry of Health both determine what kind of follow up is needed based on the health of the coronary arteries during and after KD and assign different risk levels.

#16) Risk Levels:

Risk Level I: No coronary artery changes at any stage of illness.

Risk Level II: Transient coronary artery dilation which disappears within the first 6-8 weeks.

Risk Level III: 1 small-medium coronary artery aneurysm/major coronary artery

Risk Level IV: ≥1 large or giant coronary artery aneurysm, or multiple or complex aneurysms in same coronary artery, without obstruction

Risk Level V: coronary artery obstruction

#17) Kawasaki Disease has a male to female ratio of 1.5:1.

#18) Rates of Recurrent Kawasaki Disease vary between 0.8% in the United States to 3% in Japan.

#19) The proportion of patients suffering a recurrence increase with age, while the majority of recurrence occurs within 2 years of the initial attack.

#20) In rare cases (0.2%), patient can suffer multiple recurrences.

#21) Children who are febrile more than 36 hours after the completion of their initial IVIG infusion require additional therapy.

#22) World's Top Institutions for Kawasaki Disease, according to Expertscape:

University of California, San Diego
Hospital for Sick Children, Toronto
Northwestern University, Chicago
Chang Gung University, Taiwan
Boston Children's Hospital
Academic Medical Center Amsterdam, Netherlands
Nippon Medical School, Japan

#23) World's Top Specialists in Kawasaki Disease, according to Expertscape:

Dr. Jane Burns, UCSD
Dr. Jane Newburger, Boston Children's
Dr. Standford Shulman, Northwestern
Dr. Anne Rowley, Northwestern
Dr. Masato Takahashi, USC
Dr. Brian McCrindle, Sick Kids
Dr. Rae Yeung, Sick Kids

#24) Up to 33% of KD patients have at least one concurrent infection at the time of diagnosis, but no correlation between a specific agent and the severity of the disease course has been identified.

#25) There are 4 stages or phases of Kawasaki Disease:

Acute
Sub-acute
Convalescent
Chronic

#26) A new study just out is reporting that when the initial outcome of KD is good (no persistent aneurysms), rates of cardiovascular events were no higher than in the control group. Doctors, of course, want more follow-up studies done to verify these results, but this is VERY good news for lots of little hearts out there! It also illustrates the absolute importance of a prompt diagnosis (within 10 days of fever onset) and the immediate need for a diagnostic test.

So there you go, 26 facts about Kawasaki Disease that can educate those all over the world and even introduce KD to many who have never heard of it.

I'd like to say a special thanks to everyone who supported this project. I'm amazed at the amount of KD awareness I saw spreading all over the world this year, and it gives me great hope for the future. One day soon, we will have a diagnostic test for KD. One day soon, every parent will know about this mysterious illness. One day soon, children's hearts will finally be safe from this silent monster. One day soon...

Twice!

Saturday, January 25, 2014

26 Days of Kawasaki Disease Awareness: Day 25

To commemorate the 4th annual National Kawasaki Disease Awareness Day on January 26, 2014, I will be posting 26 ideas on how you can spread KD awareness in your own community and beyond - one idea per day until the 26th.

Here are the past days:

Day 5: Write about your Kawasaki Disease experience.

Now let's get to today's idea:

Day 25: Make a Kawasaki Disease awareness inspired wreath.

If you consider yourself a crafty person, consider combining that hobby with KD awareness. There are many crafts that you could do to raise awareness -- you could make red and orange awareness ribbons, christmas tree ornaments, awareness posters, stuffed animals, and the list goes on and on.

I happen to enjoy making wreaths and was inspired by a heart-shaped, felt circle wreath that I thought lent itself perfectly to this cause. Here is my finished KD Awareness wreath.

I won't bother to write out my own instructions, considering there are many far more crafty blogs that have done just that. Here are a few more tutorials to choose from, each has their own tricks and tips:

How to Make a Ruffly Felt Rosette Wreath by Domistifluff (this is the original one that most others I've seen are based on)
Felt Ruffle Wreath by See Vanessa Craft
Pinked Felt Wreath by All Things Simple
Heart Wreath by The Idea Room

After you get your basic wreath done, you can start to customize it with KD awareness. Add pictures, words, or maybe black "KD" letters to give your wreath a personal touch. (I didn't quite have time for that with mine.)

Have you made anything crafty for KD awareness? Tell us about it and give us some pictures!

And now for another question: how you would like to win this wreath? I'm giving this wreath away to one lucky reader so you can share KD awareness in your own home. Please enter the raffle below for a chance to win. I will announce the winner tomorrow, on the last day of 26 days of KD awareness, which also happens to be National Kawasaki Disease Awareness Day!

I'm using Rafflecopter to put on this giveaway. I've never done anything like this before, so I apologize in advance if anything goes wrong! If I've done everything correctly, you should be able to enter simply by tweeting, liking on Facebook, or leaving a comment on this post. Tell us what you are planning to do for KDAD!

Here's hoping this goes smoothly!

a Rafflecopter giveaway

Friday, January 24, 2014

26 Days of Kawasaki Disease Awareness: Day 24

Here are the past days:

Day 5: Write about your Kawasaki Disease experience.

Now let's get to today's idea:

Day 24: Help a Kawasaki Disease Survivor with their very own awareness campaign or fundraiser.

A whopping 75% of Kawasaki Disease cases occur in children under 5 years of age. Many of these children will (thankfully) never remember what it's like to go through KD. But that can also have some side effects of its own, especially if the child is left with heart disease.* I can't begin to imagine how it must feel to know that you have a disease but not know why. Educating these kids about KD and helping them become a part of the KD awareness movement will give them a sense of purpose - a sense of control over a disease they once had no control over.

There are many activities children can plan, mostly on their own, that can raise awareness for Kawasaki Disease. Here is one idea from a KD family - this little cutie donated her "chores for charity" money to Sarah Chalke's KD fundraiser on Crowdrise. Besides donating their allowance to KD research, here are a few other ideas children can do:

Lemonade stand
Car wash
Dog walking
Address number curb painting
KD Lollipop giveaway or fundraiser
School presentation or project
Penny war
Magic show
Sell homemade craft/jewelry
Make and give away KD friendship bracelets

Has your child gotten involved in the KD awareness movement? Tell us all about it! And come back tomorrow for day 25 of 26 days of Kawasaki Disease Awareness!

*Sidenote: I will soon be posting many more KD facts, but this one has special meaning for today's post so I wanted to share. A new study just out is reporting that when the initial outcome of KD is good (no persistent aneurysms), rates of cardiovascular events were no higher than in the control group. Doctors, of course, want more follow-up studies done to verify these results, but this is VERY good news for lots of little hearts out there! It also illustrates the absolute importance of a prompt diagnosis (within 10 days of fever onset) and the immediate need for a diagnostic test.

Thursday, January 23, 2014

26 Days of Kawasaki Disease Awareness: Day 23

Here are the past days:

Day 5: Write about your Kawasaki Disease experience.

Now let's get to today's idea:

Day 23: Attend a Kawasaki Disease Parent Symposium.

The first US Kawasaki Disease Parent Symposium took place in San Diego, California in November of 2009. Dr. Tomisaku Kawasaki - the doctor who first recognized the disease - was in attendance, along with KD experts Dr. Jane Burns and Dr. Adriana Tremoulet. It is the only symposium that has been completely uploaded to Youtube (that I've found) and you can view it here. The KD program at University of California at San Diego has presented a symposium every year since 2009.

Another Kawasaki Disease Parent Symposium was held in San Jose, California in 2012. This symposium featured Dr. Michael Portman from the KD program at Seattle Children's Hospital and KD specialist, Sadeep Shrestha, from the University of Alabama-Birmingham. In 2013, the Seattle Children's Research Institute held its own KD Parent Symposium with Dr. Portman.

The Kawasaki Disease Foundation in India has also held KD summits for medical professionals, students, and parents.

These symposiums are a parent's best chance to hear about the latest Kawasaki Disease research straight from the experts' mouths. It is one of the only opportunities many will have to meet these KD experts in person. These doctors come equipped with the latest statistical data and directly address the audience of KD parents and survivors. There is also a question and answer period when people can get answers to their most pressing questions.

I haven't been able to attend one of these events, yet, but I've had the pleasure of talking to some mothers who have attended in the past. Their experiences show just how much awareness can be spread by attending:

"I personally think they are important because you get to learn about all the latest KD research and developments directly from the specialists in a way that you wouldn’t get just by reading about them. In other words, at the symposiums the specialists explain what they are learning about KD via their research in a language that is easy to understand, and you get to ask any questions you may have. What I get out of attending is not only a very educational experience in that it helps me keep up to date with KD but it also allows me to meet other parents who have gone through what we went through, which gives me peace of mind about the unknowns of KD through the sharing of our kids stories and updates on their health." — Vanessa Gutierrez

"The symposium is a summary of the new findings for the year in KD. Research, budget cuts, discoveries, long term research and more. I have gone two years in a row and I plan on going again this year. We get a lot of info from multiple sources in any given day. The symposium allows you to hear it from the people on the forefront of research." -- Dana Aleman

Have you attended a KD Parent Symposium? Tell us about it! And come back tomorrow for day 24 of 26 days of Kawasaki Disease Awareness.