Skip to main content

Kawasaki Disease Awareness Day

Today is Kawasaki Disease Awareness Day.

Many of you may be visiting this blog because of an email I sent out or a post on Facebook.  My main goal right now is to spread awareness about this disease.

Please take the time to read my previous post: So what is Kawasaki disease or visit  The Kawasaki Disease Foundation website directly to learn more about this disease.

You will often read that this disease is rare and affects mostly boys under 5 that are of Asian descent.  However, after Isaiah was diagnosed with Kawasaki disease (KD) I spoke to many people that knew of other children that had KD and most of those children did not fit into the typical category.  I had never heard of KD prior to Isaiah's diagnosis and because it is not a common illness it may often go misdiagnosed.  The disease can resolve itself, but without treatment the chances of coronary complications increases.  Maybe those otherwise healthy kids you hear about that die of heart problems playing hockey or basketball are undiagnosed KD survivors that had undetected coronary aneurysms?

If you have children in your life that you care about please take the time to educate yourself on the symptoms of Kawasaki disease.  They don't have to all be present for it to be KD.  They weren't all there in Isaiah's case.  If your child has any of the symptoms, please bring it to the attention of your doctor.  Don't be afraid to speak up and be an advocate for your child.  It can make all the difference.

I also urge you to share this information with your friends and family that have children.

Right now I am focusing on awareness.  I will leave fundraising for another day ;)

Comments

Popular posts from this blog

A Letter to Parents of Kawasaki Disease Heart Warriors

Dear Parent of a Kawasaki Disease Heart Warrior,

I know how you feel.  I know how scary this all is.

Maybe you have just received the news that your little (or maybe not so little) one has coronary aneurysms, because of Kawasaki disease.  What does that even mean!?  Is your child going to live with this condition for the rest of his life?  Is your child going to live to see his next birthday?

Panic may have set in, but hopefully you have calmed yourself enough to listen carefully as you receive the first set of many medical instructions that will follow.  You may be told that your child needs to start taking blood thinners right away, otherwise he may develop a clot in one of his aneurysms.  A clot in his heart?!  That can't be good.  Perhaps no one mentions the word "heart attack," but later on you may realize that this is actually what the doctor is saying without actually saying it.  Fast forward many years and your child's cardiologist may still continue to use…

Quick update: second bout of Kawasaki disease

A new post is long overdue and it saddens me that this post was created in order to share news of Isaiah's second battle with Kawasaki disease.  Coincidentally, I have been working on a post entitled "Gratitude," which is much more uplifting. Despite the recent turn of events I plan on completing that  post, so it will be coming soon.

I will not be going into too much detail right now. I just wanted to post a quick update for those of you who have been concerned about Isaiah this past week.

Symptoms Isaiah started off with a low grade fever last week, which we assumed was just the beginning of a cold or flu. We kept him home from school, but he seemed to have lots of energy during the day and was acting very much like his normal self. He did complain of a pain in the middle of his neck, which we thought may just be a sore throat.   I took him to his pediatrician on Wednesday, but he did not note any swollen lymph nodes of redness of his throat.  He took a swab for strep …

The bypass

This post is long overdue.  To be honest, I was not sure if I was ever going to write it.  I have avoided it until now, because I did not want to think about the anxious days leading up to Isaiah's bypass, the difficult days after his surgery or the excruciatingly painful day of the actual operation.  These were the darkest days of my life.

In most of my posts I attempt to weave in a theme or drive home a main point, but this time I will not even attempt to do so.  I simply want to share part of my family's experience with you.  I am sure there will be many details that have been forgotten due to the chaos of those days and others that have been blocked out by my heart and mind.  Please forgive any errors I may make with regards to medical details or terminology.  Keeping all that straight can be a challenge even on the best of days.

Friday, April 5th, 2013 - Devastating news Isaiah finally went in for his cardiac catheterization on the Friday. He was unable to have it done t…