A KAWASAKI HEART - Helping to Promote Awareness of Kawasaki Disease

Steven after his second battle with KD
Welcome to A Kawasaki Heart

The name "A Kawasaki Heart" defines not only the involvement of the heart in Kawasaki Disease, but the heart's desire to serve others through Jesus Christ.

I'm Steven - I've had KD TWICE

A Kawasaki Heart is a non-profit organization designed to promote awareness and support for those who have been affected by Kawasaki Disease.

PEELING HANDS
Steven in the hospital
PEELING FEET

These pictures represent a few of the symptoms associated with Kawasaki Diseae.  The skin on the hands and feet peel in layers in the later stages of KD. If the child has not been diagnosed with Kawasaki Disease, it is very helpful in making the diagnosis.  Children hospitalized and treated with IVIG and aspirin before this stage, generally have a better chance of having no heart problems.  The center picture shows the red, droopy eyes, and the skin rash, just a few days into the illness.

There are many signs and symptoms of Kawasaki Disease, a rare disorder that affects children all over the world.  First noted by Dr. Tomisaku Kawasaki, of the Red Cross Hospital, in Japan in 1967, thus earning the name "Kawasaki Syndrome",  Kawasaki Disease has become one of the leading causes of acquired heart disease among children.  Although Kawasaki Disease is becoming more well known than in the early days, it is still a very rare condition, affecting only about 4,000 children in the United States each year.  The disease is very hard to detect since some of the symptoms disappear before others show themselves.  It is important when your child is sick to note all symptoms, even if some have already gone away.  Because it is so rare, and the treatment is risky, patients must meet certain criteria for diagnosis.

Y Y Y KAWASAKI KIDS Y Y Y

All of the children pictured here have had Kawasaki Disease at least once in their lifetime.  Many are doing well, while others lost their lives.  Send us your photo and we'll post it in the Kawasaki Kids section.  All Names will be withheld.  Please indicate the month and year that your child had KD.  If you are an adult that had KD as a child, we'd love to add your picture as well.  Thanks for sharing!  Please send all correspondences to akawasakiheart@aol.com

I had KD in May of 2005
I had KD in October of 2003
I had KD in September of 2004
I had KD in October of 1998
I had KD in June of 2004
I had KD in February of 2000
I had KD in February of 2004
My Story - In February 0f 1990, I was diagnosed with Kawasaki Disease.  Unfortunately it took nearly 14 days to diagnose me, and by that time I had already developed and aneurysm in my left coronary artery.  Fortunately, with the treatment of high dose aspirin and IVIG, I recovered quickly, and the aneurysm resolved by my one year follow up visit with the Cardiologist.  It was a tough few weeks for my family as they watched my health deteriorate little by little with no answers from the daily trips to the pediatrician.  I was 2½ at the time, ran a high fever for several days, developed a terrible rash, a swollen lymph node in my neck, swollen red tongue, peeling skin in the groin, hands and feet, and arthritis like symptoms as well as a 7 pound weight loss.  Each day it seemed a new symptom would present itself and my condition would worsen.  Finally after 14 days, the pediatrician called with the potential diagnosis and recommended a trip to Children's Mercy in Kansas City, the closest children's hospital to our home at the time.  It was there that I became the subject of study for many physicians, cardiologists, and interns, for many being their first experience with KD.  Well, as you can see, I have made a full recovery, but not without another bump in the road.  In February 1994, I became ill with what seemed to be an ordinary sore throat, fever, and congestion along with a giant sized lymph node in my neck.  Our family had relocated to Georgia and I was now in the first grade - age 6½.  A routine visit to the pediatrician gave a diagnosis of pharyngitis and an antibiotic. By the next morning, my fever had spiked, and I was covered with a raised red rash.  My mom called the pediatrician and said "I know this sounds crazy - but I think Steven has Kawasaki Disease".  Fortunately, without any hesitation the pediatrician sent us to the Scottish Rite Children's Hospital in Atlanta.  However, since it is extremely rare for a child to have a recurrence of KD (less than  1% of children have recurrences), KD was the last thing the hospital pediatricians thought I had.  They tested for a number of ailments, all returning negative results, and as my condition worsened, I was finally diagnosed with recurrent KD.  This time I didn't respond to the IVIG as well, and required a second dose over the course of the 7 days that I remained in the hospital.  But when all was said and done, I returned home and back to my energetic, usual self.  Thank God for miracles!  Ten years later, in February of 2004, we were doing some research on the internet ( a resource my parents didn't have when I was sick) and found that children were still not being diagnosed quickly with KD.  With all of the research that has been done and continues to be done, the awareness of KD was not high enough to allow quick diagnosis of the illness.  We began a website, which a year later developed into a non-profit organization, to help promote awareness, and offer support and assistance to those who are facing what we did then.  Drop us an email or sign our guestbook and let us know how we can serve you and your family.  God Bless!
I had KD in October of 2002
I had KD in July of 2004

KAWASAKI DISEASE AWARENESS DAY IS MAY 5TH

Helping with awareness in Mississippi
KAWASAKI DISEASE AWARENESS DAY
Helping in California

All across the United States, and abroad, families are pitching in to help promote awareness of Kawasaki Disease.  Thanks for supporting "A Kawasaki Heart"

Helping in North Carolina
I had KD in March of 2005 (Click here to visit my site)
I had KD in December of 2004
In Memory of Luke
He was never diagnosed with Kawasaki and died on 12/04/04 at just 14 weeks. The autopsy revealed that he had Kawasaki and a one inch thick aneurysm.
His mom wrote: He is the love of our life and our sweet angel who we will be reunited with in Heaven
In Memory of Paul
Kawasaki Disease took his life at age 11 (Click here to read his story)
I had KD in January of 2004
I had KD in March 2005

Symptoms of Kawasaki disease include: a fever that lasts at least 5 days, red eyes, swollen red lips and tongue, a body rash, swollen feet and hands, and swollen lymph nodes.

Y IF YOU THINK YOUR CHILD HAS KD ~ PLEASE CONTACT YOUR PEDIATRICIAN AND/OR TAKE YOUR CHILD TO THE NEAREST CHILDREN'S HOSPITAL. Y

"I can do all things through Christ who strengthens me" ~ Philippians 4:13

I had KD in May of 2001
I had KD in February of 2008
Strong as ever - Steven at age 21
Steven playing High School soccer
I had KD in March of 2005
I had KD in February of 2004
I had KD in January 2005
I had KD in May 2005
I had KD in December of 2008
I had KD in February of 2005

lips.jpg

These are classic examples of Kawasaki Disease.  The eyes aren't as red anymore, but they continue to droop and give that tired appearance.  Notice how the lips are cracked and bleeding, as well as peeling the top layer of skin.  Vaseline, seen used here, is great relief for the painful lips.

While this picture is pre-digital, if you click for larger view you can see the full body rash

Y HERE ARE SOME HELPFUL LINKS Y




Most Patients with Kawasaki Disease are treated with IVIG - Intravenous Gamma Globulin

What is IVIG?  IVIG is a solution of globulins containing antibodies normally present in adult human blood. Globulins are simple proteins that provide immunity against disease. A protein is made up of several amino acids, which are the microscopic building blocks that make up all cells. Many globulins are inherited, so that the body is able from birth to fight off bacteria and other infections. IVIG is used for treatment of people who are unable to produce sufficient amounts of immune globulin antibodies.

INFORMATION REGARDING AUTOIMMUNE: 
One of the functions of the immune system is to protect the body from invasions of viruses and bacteria.  In normal cases, this is precisely what happens.  However, in some cases, the immune system makes a mistake and attacks healthy cells in tissue and organs instead of the invader.  This is known as an autoimmune response.  Many research documents indicate that Kawasaki Disease "may" be an autoimmune reponse to a "possible" toxin or bacteria that has entered the body.   There has also been much documentation regarding the "genetic predisposition" of a Kawasaki patient that makes him/her more succeptible to an autoimmune response.  To conclude that Kawasaki Disease is in fact an Autoimmune Disease, may be stretching it...However, research points to the strong possibility that is is indeed somehow related to autoimmunity.  For more information about autoimmune, visit the AARDA via the link provided above.

There are two main types of Autoimmunity;  Organ-Specific and Non-Organ Specific:

Organ Specific is when the autoimmunity is directed at a specific organ.  This is apparent in diabetes(pancreas), Addison's disease(adrenal glands) and thyroiditis( the thyroid) as well as many others.

Non-Organ Specific is when the autoimmunity is widespread throughout the body.  This is apparent in illnesses such as Lupus, Rheumatoid Arthritis, and others.

This site is designed for information purposes ONLY and is not intended to be a medical source.  The purpose of this site is to promote understanding and to share ideas.

A KAWASAKI HEART, ALABAMA  35150