Kawasaki Disease Diagnosed Via Facebook, Saves Young Boy’s Life

The power of social connection

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Here’s one from the social media is awesome file:

Next time you think you are oversharing on social media, remember that all those pictures and updates you post are being read by hundreds of people – some of who might know something that you don’t know.

That’s what happened for Deborah Kogan. And she explains her story in a piece for Slate.com called “How Facebook Saved My Son’s Life.”

I know, that title seems a tad dramatic, but it really is the case that without Facebook, the story could have ended much differently.

On Mother’s Day, Kogan awoke to find her son Leo had a fever and a mild rash. Like any concerned mother she took him to a urgent care center that was open on Sunday. The rapid strep test came back negative, but it sometimes does with children. The doctor decided to treat Leo for strep anyways.

Armed with Amoxicillin, Kogan felt pretty at ease.

The next morrning her son’s condition had deteriorated. Not only did he have rashes, but he was also swollen. She posted a picture of Leo on the doctor’s exam table on Facebook. “Baby getting sicker, Eyes swollen shut. Fever rising. Might be scarlet fever.”

The next morning, his condition was even worse and Kogan was beginning to become extremely worried. She took a bunch of pictures with her iPhone and posted one to Facebook. It was the one that was the least dramatic, as she didn’t want to frighten her Facebook friends. She sent the rest to her family physician. Here’s that photo, courtesy of Kogan and Slate –

Just minutes later she was receiving calls and direct messages from people who had seen the photo on Facebook. Kogan’s former neighbor, her pediatrician friend and her pediatric oncologist cousin all suggested a strange diagnosis: Kawasaki Disease.

According to the PubMed government database, Kawasaki disease is a rare and not very well understood condition. From the database

Kawasaki disease occurs most frequently in Japan, where the disease was first discovered. In the United States, after congenital heart defects, Kawasaki disease is the leading cause of heart disease in children. Most of these patients are younger than age 5. The disease occurs more often in boys than in girls.

Kawasaki disease is a poorly understood illness. The cause has not been determined. It may be an autoimmune disorder. The disorder affects the mucus membranes, lymph nodes, walls of the blood vessels, and the heart.

Kawasaki disease can cause inflammation of blood vessels in the arteries, especially the coronary arteries. This inflammation can lead to aneurysms. An aneurysm can lead to a heart attack, even in young children, although this is rare.

It’s symptoms include swelling, rashes and redness, bloodshot eyes, vomiting, diarrhea, joint pain and many more.

Kogan decided to act on this Facebook-diagnosis even though it was an odd experience filling out the paperwork. From her story –

I called my family doctor and told him I was heading to the hospital. “I just have a Spidey sense,” I said, “that he’s really sick.” Not a lie, but not the whole truth, either, though what was I going to say? Three of my Facebook friends think my kid has an extremely rare childhood auto-immune disorder which I just read about on Wikipedia, and since they all contacted me after I posted a photo of him on my wall, I’m going? It seemed … wrong! Reactionary. And yet as much as I wanted to be my usual mellow self, the immediacy of the Facebook feedback was enough to push me out the door.

It turned out to be the right call, as her son was treated for the disease and subsequent liver disease triggered by the condition. He is still recovering from that.

One lesson that Kogan took from all of this – Facebook’s ability to “profoundly connect” people was a lifesaver. Not only in diagnosing the illness, but keeping her connected during the long nights in the cold setting of the hospital.

Do you think that social media is leaving the world a cold, desolate place void of any human interaction? For Deborah Kogan, at least, it was a lifesaver.

Kawasaki Disease Diagnosed Via Facebook, Saves Young Boy’s Life
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  • http://ichautari.com Dura

    Today i know about Kawasaki disease. Thanks for post.

  • PS

    Was it really necessary for the author to denigrate her husband in this article? Give the man a break! He is probably doing the best he can. Being married to this shrew is probably hard enough without being pilloried in the national news.

  • Danno

    I’m so happy that your little boy is feeling better. My Daughter was diagnosed with Kawasaki and it has been a long road to recovery. I have 2 children and i have never seen any child as sick as my little girl was with that disease. It is no joke and very surprising that doctors and health dept and other offices let you know about this disease because it can kill a child. Dont be so hard on your Husband, I’m sure he was just as scared and worried about your little boy as you were. Good Luck guys, hope your boy will leave a long and healthy, happy live.

  • effiedilbeck@live.com

    One more diagnosis that was later confirmed was occipital lobe epilepsy. I had strange symptoms for many years and after a flurry of occurences, I went on the internet to see if anyone else had the same thing. http://bit.ly/pczO8x

  • http://www.aaareplicabag.com high replica

    love life! save life!

  • larry

    CDC has reportd of this syndrom and the RotaTeq vaccine.

  • larry

    CDC has reports of this syndrome appearing after vaccination with RotaTeq

  • http://www.selfgrowth.com/articles/how-to-get-your-boyfriend-back-and-regret-breaking-up-with-you Hazel

    Facebook helps dude!


  • Gloria Thomas

    Wow Good thing you caught it in time. My son is now 11 yrs old and he was diagnosed at 9 months. Trust me we went through the same exact thing rushing to the er to get sent home with tylenol and eye medication. It is scary and it hurts when the DR. tells you this medicine may or may not work or yourchild may be here anywhere from 30days – death. I only had one child because after knowing I could loose him i would not want to go through this with another child. God is amazing after falling on my knees and giving my son to God and the goblin was given my son instantly recovered even to the Doctors amazement as something never seen before with Kawasaki. I checked the life expectancy and It is 10 years but as I say god is Amazing and my 11yr old stands taller than me and plays center for the Boys and Girls club. What is important to stay consitent with the follow ups Best wishes and God Bless you and your FAMILY!

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