Welcome to the faces of Kawasaki disease,
a page
built by mothers of KD children to provide a place for parents to join in
thought, feeling and action. This page is a
collaboration created by a network of mothers, whose children have
suffered from Kawasaki disease, from across the United States.
Since this disease has affected all of our lives at one point or another we are committed to raising awareness of this disease, while encouraging action amongst the Kawasaki community and acknowledging those who work hard to inform the public of the dangers of this disease. In short, we follow doctor Jane Burns, M.D. head of the Kawasaki disease research center at UCSD words, in that we believe that:
Since this disease has affected all of our lives at one point or another we are committed to raising awareness of this disease, while encouraging action amongst the Kawasaki community and acknowledging those who work hard to inform the public of the dangers of this disease. In short, we follow doctor Jane Burns, M.D. head of the Kawasaki disease research center at UCSD words, in that we believe that:
"Everyone
has a voice, however soft, and can be heard. The way we change the
world is one person at a time" (Jane C.Burns, M.D.).
All
in all, we created a very diverse network in that some of our children
have suffered long term heart conditions, others have no heart damage,
some have had recurrences of Kawasaki disease, and some needed more than
one IVIG treatment; therefore, we offer a well rounded amount of
differences in our team in hopes that the Kawasaki community who comes
across our page can relate to each one of us. As mothers of children who have suffered from Kawasaki
disease we
understand the necessity and comfort that comes when sharing our
children
stories with others, as well as the urge to want to be involved in
raising
awareness of this mysterious disease, while getting to know other KD
parents. Therefore, this site will aim to continue to raise awareness of
KD, to acknowledge
the many KD advocates and parents that have continuously dedicated much
of
their time to inform the public on KD, and to raise action amongst KD
advocates, parents and survivors. In short, this is a place where all
the faces of Kawasaki disease can come together and share their
experiences with KD.
Comedy Fundraiser In Honor of Johnny Volpe
by Linda Danielle
linda@thefacesofkd.com
In August 2008, my life and that of my families was forever changed. The illusion that we lived in was stripped from us as we faced a virtually silent attacker. One that we were not prepared for because until that day, we hadn't even known it existed. Kawasaki Disease crept into our lives and wreaked havoc on us.
Then 20 months old, Johnny developed a persistent fever and what I thought was conjunctivitis. After two days of treating his eyes with pink eye drops, I realized that there was not the usual discharge that accompanies pink eye. With each day, my son became more irritable, he ate less and had diarrhea, his mouth was extremely red and he had sporadic bumps on his body and light peeling of his fingertips and toe tips.
Click here to see more...
by Linda Danielle
linda@thefacesofkd.com
In August 2008, my life and that of my families was forever changed. The illusion that we lived in was stripped from us as we faced a virtually silent attacker. One that we were not prepared for because until that day, we hadn't even known it existed. Kawasaki Disease crept into our lives and wreaked havoc on us.
Then 20 months old, Johnny developed a persistent fever and what I thought was conjunctivitis. After two days of treating his eyes with pink eye drops, I realized that there was not the usual discharge that accompanies pink eye. With each day, my son became more irritable, he ate less and had diarrhea, his mouth was extremely red and he had sporadic bumps on his body and light peeling of his fingertips and toe tips.
Click here to see more...
The Kawasaki Disease Parent Symposium
by Bethany Sheppard
bethany@thefacesofkd.com
by Bethany Sheppard
bethany@thefacesofkd.com
The
2011 Kawasaki Disease Parent Symposium started off on a cold and foggy
morning. After registration and dropping the children off with the
wonderful volunteers we were taken to a small room with food and
beverages and were joined together with other parents, doctors,
students, and anyone else who had an interest in learning more about
Kawasaki disease. We
sat next to the parent’s of a five-month-old little girl who had just
been released from the hospital with KD three days earlier. It broke my
heart to look at this baby and be reminded of just how small my son was
when he was first diagnosed with KD.
There were a number of speakers who discussed how they are helping to find more information about this mysterious disease. As I listened to each person, I was given hope; hope for the future, that we will find a diagnostic test so no child will have to suffer the horrible consequences of KD. There was a point in the day where we were able to anonymously write down any questions we had and then the doctors would answer them to the best of their knowledge.
Click here to see more...
There were a number of speakers who discussed how they are helping to find more information about this mysterious disease. As I listened to each person, I was given hope; hope for the future, that we will find a diagnostic test so no child will have to suffer the horrible consequences of KD. There was a point in the day where we were able to anonymously write down any questions we had and then the doctors would answer them to the best of their knowledge.
Click here to see more...
5k In Honor of Sofia Johnson
This
past October the Johnson family were running for a cause-the Kawasaki
Disease race for a diagnostic test for KD cause. Angel decided to host a
5k in honor of her daughter, Sofia 
Johnson,
to aid our "Aid for a Test" fundraiser for a diagnostic test for KD.
Here is what Angel did: We started off by finding a place to start the
5k, then we had to get it approved through the city. I had our 4-H club
make the signs to show walkers/runners the route. We ordered t-shirts
for the participants, but also decided to sell them as well. We went to
the area merchants for donations to hold a silent auction. We had a huge
response for the donations. We posted flyers in businesses and the
event was also printed in the area newspapers; they put an article in
the paper. We had over a hundred people participate in the 5k. We are
still waiting for donations people want to make and waiting on them to
get their t-shirts before we have a final count of the money raised, so
as of right now we are around $2000 raised!
Here is Sofia's journey with Kawasaki Disease.
Sofi is a fun loving 5 year old who loves everyone! When she was just 26 months old she became very ill. It seemed as though she had the flu. She started running a fever, runny nose, common cold symptoms along with throwing up. We had several trips to the ER to find out she had a viral infection and it needed to run its course.
Click here to see more...
Johnson,
to aid our "Aid for a Test" fundraiser for a diagnostic test for KD.
Here is what Angel did: We started off by finding a place to start the
5k, then we had to get it approved through the city. I had our 4-H club
make the signs to show walkers/runners the route. We ordered t-shirts
for the participants, but also decided to sell them as well. We went to
the area merchants for donations to hold a silent auction. We had a huge
response for the donations. We posted flyers in businesses and the
event was also printed in the area newspapers; they put an article in
the paper. We had over a hundred people participate in the 5k. We are
still waiting for donations people want to make and waiting on them to
get their t-shirts before we have a final count of the money raised, so
as of right now we are around $2000 raised!Here is Sofia's journey with Kawasaki Disease.
Sofi is a fun loving 5 year old who loves everyone! When she was just 26 months old she became very ill. It seemed as though she had the flu. She started running a fever, runny nose, common cold symptoms along with throwing up. We had several trips to the ER to find out she had a viral infection and it needed to run its course.
Click here to see more...
cache/wst.opf.608862.xml
Latest Kawasaki Disease News
A Kawasaki team physician from UCSD is available 24 hours a day, for a physician-to-physician consultation for suspected Acute Kawasaki disease cases.
For physician-to-physician consultations call Rady Children's Hospital operator at 858-966-1700 to have the Kawasaki Team Physician paged. And/or follow the official Rady Children's Hospital page with the above information by clicking here.
