Social Networking What social networks can offer to those with chronic conditions.

Scott Strange Dx’d Type 1 at age 7 in 1970, pumping since 2008 and use a CGMS I am not a medical professional, don’t play one on TV and did not stay a Holiday Inn Express last night, so taking anything I say as medical advice is just plain crazy. Got it?

My Story about Social Networks My parents grew up during the Great Depression. Dad was a WWII vet and Mom a WWII army wife. When bad things happened, you just dealt with them as best you could. That is how I treated my D, as best I could with no real support network.

More about me, me, me I originally went online searching for pumping info, which I found plenty of. The most important thing I found though, was something I didn’t even realize I had found, let alone know I needed to know. I found out I was diabetic at age 7 and 40 years later, I found out that I wasn’t alone

Why I needed support Diabetes is a solitary disease, I was alone in it for 40 years because no one else “got it” Unless you are a Type 1 diabetic, you probably have little understanding of what we truly do and truly go through on a daily basis. The people I found do “get it” and can offer advice and support because they have gone through everything I have. I feel “at home”

Social Networking Over the past few years, numerous sites have emerged dedicated to various topics of interest, like diabetes, such as Tudiabetes.org and Dlife.com, not to mention all the personal blogs These sites make it easier to “find” others like yourself and benefit from their experiences. I know that I have physically met more T1’s in the last year than the entire 40 years before that, let alone met virtually

Why it Works The internet makes it possible to learn an incredible about any given condition in a very short time. You can learn it from others with the same condition and won’t need a medical degree to understand what is going on. It enables you to become an ePatient (empowered patient)

It’s Your Condition And you are the one ultimately responsible for your care. Having the support and combined wisdom of a multitude of other diabetics allows you to ask intelligent questions and take charge of your medical team. Medical professionals should be advisor’s only. If yours won’t play by those rules, find some who will

Now the Bad As with anything, there are drawbacks, the biggest one in this context being privacy. How much of my medical history do I want people to find out about through Google? Some employers regularly check for online information about current and potential employees. Will that happen to you? Who knows?

What can I do? Use an alias! Instead of Scott Strange, I could simply be known as Scott or more creatively known as ThatCrankyOldGuy. You still get all the networking benefits, but have hidden your name from a search Never, Ever post your email address in a non-private message. This WILL link your email to your alias and thus to you. Goggle yourself every once in a while

There’s More Bad, Too Snake Oil Salesman – People are constantly marketing the latest “cure”. Remember not to make any major changes to your treatment regimen, like substituting a raw food diet for your insulin dose, without running it past your medical team first. If there is a cure, I guarantee that you’ll hear about it from more than “some guy”

Can’t We All Just Get Along? Bullies – Every playground has one and the internet is the Biggest. Playground. Ever. Sometimes you’ll come across someone that you just won’t get along with, just like you do in real life. A little conflict is good once in a while, as it can help people learn from each other and come up with better ways to do things

Is There Anybody Out There? Active Participants – People who visit and make some type of post/comment/reply, often on a daily basis Occasional Participants – The same but not as often Lurkers – Stop by & read content. They may not feel comfortable posting for whatever reason and may “need” the site more than anyone else for support

Of Those Who Post Cheerleaders – Everything will just be fantastic if you just have a great attitude! Doomsayers – Everything will be a total disaster. Doomed, I say, doomed! Coaches – Will give you help when you need it, an “atta-boy” when you’ve earned it and a swift kick in the pants when you deserve it

1970 vs. 2010 We have better tools, but the basic T1 treatment has not changed - insulin. We have the same stresses and worries involved in a lifelong condition today as we did then We still have the same long-term prognosis Honestly, the more it changes, the more it seems to stay the same

Dude, WTH? The most important advance in our care, in my humble, yet always correct opinion, is social networking. You can see the stories of a multitude of normal individuals, just like you, succeeding in life, again, just like you will. And, you’ll hear sad stories too, maybe you can offer some advice or comfort You can see that you are not alone

What Does the Future Hold? As long as regulatory agencies stay out of social networking, it will continue to evolve into a very powerful tool that can help people on a daily basis, even more than it is today. We are just now starting to see the effects of social networking, much of this wasn’t in place even 5 years ago Renaissance?