Kawasaki Disease: Can Facebook Save Your Life Too? : Exclusive Renegade Health Article

Saturday Jul 16, 2011 | BY |
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facebook-advice-kawasaki-disease-from-this-guy
Beware of medical advice on Facebook, it could come from this guy…

Last night, I was slogging around the Internet – following links from my Google Reader to find some relevant articles for next week’s “Digest This!” column.

After about an hour of reading nothing of much interest, I came across and article on Slate.com about a woman who posted some pictures of her son’s rash and swelling on Facebook. She was concerned because her doctor wasn’t sure what was happening after a string of medical tests and wanted to reach out to see if anyone in her social network could help.

After posting the pics, a neighbor saw them and called to tell her that she needed to take him to the hospital immediately because it looked like Kawasaki disease, a rare and possibly fatal autoimmune disease – if left untreated. The neighbor’s child had the same disease a few years before.

The woman listened, took her son to the doctor, mentioned Kawasaki disease, the doctor agreed and then treated him accordingly.

Her son is now recovering with some liver damage, but dodged – for the most part – a serious, maybe fatal autoimmune reaction.

Facebook probably saved his life.

Completely amazing.

Could Facebook save your life too?

The natural health world is filled with people who want to help.

It’s also filled with people who’ve read significantly more than the regular population. (If you’re thinking that isn’t you, remember the average person reads one book a YEAR!)

What this means to me is that chances are the people you’ve attracted on Facebook (if you’re even the least bit active) probably know a thing or two that your doctor may not.

These days your social network is your personal town hall. A place where you can voice grievances, share information and ask for help.

It’s a real-time personal advice board that is 1000% more effective than Ask.com or Yahoo! Answers.

I see social networks as a fantastic place to ask for advice if you need it, but…

What’s the downside of getting medical or health advice on Facebook?

The misinformation.

You may have noticed, there is a lot of misinformation that is spread though social networking channels (as well as in person.)

What I’ve found over the years is that a good portion of information spread in the natural health world can come out a little distorted – like it’s been through a giant game of telephone.

Remember that game? It’s the one where a group of people get together and one person starts with a sentence that is whispered around the room all the way to the last person. The person at the end then shouts out the sentence while everyone laughs because it’s transformed into something completely different than the original.

I’ve seen this game of telephone on Facebook many times.

Here are some examples:

“You’ll never have a protein deficiency.”
“Cheese is 100% fat.”
“If you’re feeling bad on a 40 day juice fast, it’s just your body detoxifying.”

These statements may not be true and when coming from your own personal circles may be misleading – because you likely trust the people you’re connected with.

Brevity leads to more confusion.

The neighbor of the woman in this story picked up the phone to call her friend and tell her to go to the hospital because she suspected that the boy had Kawasaki disease.

Imagine if she had simply commented, “go to the hospital, it’s Kawasaki disease.”

The mother may not have taken it seriously. The brevity of Facebook and other social networks doesn’t bode well for credibility or accuracy.

While the average time a doctor spends with a patient is somewhere between 3-20 minutes (depending where you get your information), the average Facebook post is 120-180 characters.

Short posts don’t contribute much more than confusion, and Facebook and Twitter (limited to 140 characters) are limited in their depth because of the nature of the medium to inspire quick, truncated responses – most people aren’t there to write in-depth, thoughtful analysis of the possibilities you may be experiencing.

When people write to us on the blog or in our Helpdesk or on Facebook, we see that most people aren’t very clear about their situation. Here’s an example (name withheld):

For a few months now I have been vigorously taking herbs and vitamins daily and have switched my diet to over half raw. My main problem is that I still lack energy and my mid afternoon slump lasts until bedtime. Do you have any suggestions?

While this person is clearly suffering, we’re not really given any valuable information to even point them in the right direction.

What herbs? What vitamins? What are you eating that is raw? Have you had any past health issues? How old are you? I think you get where I’m going with this…

A wrong answer to this question could lead this individual down the wrong path pretty quickly.

I could imagine posts on Facebook to this comment:

“You need to eat more raw, 100% is best.”
“Stop taking vitamins, you don’t need them.”
“If you slump during the day, it’s definitely detox symptoms.”
“You must eat an all fruit diet, it’s the only way to eat, all societies eat an all fruit diet, look it up.”

All of these, which I’ve seen permutations of, are relatively useless to this individual, since they haven’t been clear about their diet, lifestyle or habits.

Finally, medical professionals really can’t post advice on Facebook, so who’s giving you advice?

In this case of Kawasaki disease, everyone wins. Mom, her son, her neighbor, Facebook, the doctor – everyone comes out as a hero, but there’s a challenge that practitioners have when they’re posting on Facebook that everyday people or health renegades like us don’t need to abide by…

Medical or licensed practitioners ethically and legally aren’t really allowed to give advice on Facebook. They could lose their license.

On the other side, someone who’s not licensed, can do what they want and give advice rather freely. This is a good and a bad thing.

The advice you’re likely getting from asking for advice possibly isn’t from someone who’s trained (yes, in natural medicine as well), but they may or may not know what they’re talking about.

How much does this matter? Depends…

It definitely doesn’t mean that the information given is incorrect, it just means that and advice that you’ve solicited from Facebook is probably best used as a starting point – not as a diagnosis or treatment protocol for your challenge.

I’m sure, you’re smart enough to understand all this, I just feel – based on my own past experiences – that I need to make this clear.

Social networks have given us an incredible reach and ability to find and gather information, but they’re also created more noise (shouting?)

I see nothing wrong with soliciting medical advice from your social network for Facebook (again in this case of Kawasaki disease, it’s a total winner), but I also don’t feel that it can replace the teamwork found when you work with a practitioner who can spend some time with you to put together a protocol based on their experience and knowledge.

I want to know your thoughts: Has Facebook or Twitter ever helped you (or not) with a health issue you were having?

Live Awesome!
Kev

Kevin Gianni

Kevin Gianni is a health author, activist and blogger. He started seriously researching personal and preventative natural health therapies in 2002 when he was struck with the reality that cancer ran deep in his family and if he didn’t change the way he was living — he might go down that same path. Since then, he’s written and edited 6 books on the subject of natural health, diet and fitness. During this time, he’s constantly been humbled by what experts claim they know and what actually is true. This has led him to experiment with many diets and protocols — including vegan, raw food, fasting, medical treatments and more — to find out what is myth and what really works in the real world.

Kevin has also traveled around the world searching for the best protocols, foods, medicines and clinics around and bringing them to the readers of his blog RenegadeHealth.com — which is one of the most widely read natural health blogs in the world with hundreds of thousands of visitors a month from over 150 countries around the world.

12 COMMENTS ON THIS POST

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  1. maca says:

    They’ve never helped me with any health issues. In any case, I would only listen to any advice if I trusted the source of the advice.

  2. Yvonne says:

    This was a great article, because I have often seen both ends of the spectrum in terms of medical advice.
    One FB PG suggestion I had been taking so had read quite a bit about it. They didn’t add the many contraindications. Since a few people said they were going to ‘obtain’ it without going to a practioner. I quoted the contra. incl the source noting I was not a dr just someone who had taken it. They defended saying they were all medically trained then blocked me! Strange I thought as Kevin says when you’re medically trained you couldn’t give this advice due to litigation & if they were then they should be more specific with advice???
    Be wise, be informed and research wide. Thanks for your great site and info Kevin. Yvonne

  3. Gail says:

    I give ‘advice’ all day long. But, it’s to be viewed the way a general conversation is; a coffee-table chat; a visit to “Mom’s”. It’s SUGGESTIVE.

    EVERYONE is RESPONSIBLE for themselves. In this day and age, people are not being taught to be 100% responsible for anything and everything pertaining to their existence – in fact all the opposite.

    The problem with people not wanting to take the time to do their own research, learning, and growing, is that they are MISSING OUT on the journey of knowledge and experience.

    What is the quote that Nomi always signs off with? That first there is ridicule; then skepticism, etc…Well, at first that is how it goes with me. Just now, my co-workers are reaching the stage where they say “go ask Gail..”
    Am I a doctor? Am I degreed? No..but I will share alot of my legwork and point someone in the right direction – the rest is up to THEM!

  4. Thomas says:

    You are right Kevin. There are a lot of health “experts” giving advice all over the Internet, mostly who have absolutely no medical training. Maybe they read a book written by someone like themselves and wrote a ‘copy’ of it’s message just to make money. But that doesn’t make the information true.

    Some do it just to sell products. Infomercial videos and blogs, etc.

    You are right about it being better to a professionally trained person for advice.

    For online hints I like Earth Clinic (http://www.earthclinic.com/). It’s a searchable collection of folk remedies and holistic cures. People tell what worked and what didn’t. It’s actual experience and not the spreading of untested urban legends. And you can see the responses of many people on a subject, not just a couple of ‘selected’ cases.

  5. zyxomma says:

    I was trained by a great N.D. after about 30 years of independent study, and have certifications in a variety of modalities. However, I don’t dispense advice on FB, nor have I sought it. If someone in my network said s/he needed help with a problem, I’d do what I could–if it’s someone close to me, probably pick up the phone or send an email–but without a chance to look at his/her eyes (I’m an iridologist, among other things) and have a proper consultation, I wouldn’t be comfortable giving advice. Health and peace.

  6. Velda says:

    I agree with Gail, people have a personal responability to check things out. In the case you were talking about, Kevin, the mother did not assume anything. She did what was reasonable and took her son to a doctor for a diagnosis – which is what her neighbor suggested. Taking and giving advice is fine, but you need to do your homework. When you give advice, I believe you should also advise the person to check with their health care professional. Taking and giving advice is a great way to get you thinking about things differently perhaps that what you do. With that said, I don’t know that I would give any kind of medical advice on FB … unless it was qualified by saying it is possibly “xyz” and check with a health care professional. Not sure I would even do that. You really don’t want to take responsbility for someone else’s life – especially if you don’t know them personally? Kind of an odd time we live in. Thanks for an interesting article, Kevin.

  7. Kathy says:

    No, only the Lord Jesus can save our lives, and only we are responsible for looking after our lives and that is why we should educate ourselves re our walk with Jesus, the food we eat, the books we read, the media we watch & the activities we partake in!

  8. Sandra DeSmedt says:

    I’ve never sought out health advice on
    FB, but I have used a group called Holistic Mom’s Network. They have an online forum available to members, and we regularly ask each other health questions and give advice. I have a 17-yr. old who, though now stable, went through a few years of hell with bipolar disorder and anxiety. It was advice from my network at Holistic Moms that led me to the holistic psychiatrist who was able to help her. There are a lot of post along the lines of “It’s been recommended that I try ______ for my __________ condition. Does anybody have any experience with this or know a safer alternative?” we make suggestions, but I think everybody in the group knows to weigh the advice carefully and seek medical treatment when needed. In fact, we often point each other in the direction of a health professional that could be helpful.

  9. Laura G says:

    Hi Kev-
    Interesting article. And interesting timing for me.
    I have a good friend who works security at a couple venues in our area. He usually stands at the stage while bands play.
    Last night while working he was sweated on by the lead singer of the band. He posted a question:
    Can you get Hep C from someone’s sweat???

    Thanks for any input or knowledge you have on this.
    Laura

  10. Yakitah says:

    All the comments are very good intelligent ones and none are really right or wrong. In my opinion it is up to an Individual to do some
    research on their own, be it asking the so-called Professional(doctor) N.D., Acupuncture
    Folk Remedies, what ever, and then use some
    common sense which isn’t very common today. You would then go through the process of elimination to then discover what is working.

    Of Course an Emergency is always an E.R. situation.

    Ya,

  11. Lynn says:

    I don’t think I would take advise from one person out of hand, but that’s why we are on this thing, to gather information and eventually come to a conclusion. Even my doctor is to be questioned. Certainly a man with an education, but simply another person to gather info from. Ultimatly I am responsible for my own health and I learn from everyone.

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