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Finding Diabetes on Twitter.

One of the Friends for Life sessions that I co-lead with my favorite tall guy, Scott Johnson, was about finding diabetes support through social media.  (More on that session this week, but I wanted to get this post up today because there's a diabetes chat that takes place on Wednesday nights.)  While that session had it's own discussion points and a broad definition of what social media really is, the same question came up over and over again:


It wasn't even a whole question, more like a word thrown out to the crowd and lingering there, confused about where it should roost.  Twitter is a completely and utterly confusing concept to people who aren't involved in that method of communication - hell, it's chaos for those of us who are familiar with it, too.  But aside from questions about how to start a community or blog, and how control sharing on Facebook, some people really wanted to know how to navigate the muddy waters of Twitter.

In efforts to answer some of those questions from the session, I wanted to give a little Twitter & Diabetes 101 here, with links to resources, to help those who want to find people talking about diabetes on Twitter.  Here's the crash course:

What is Twitter?  Twitter is a method of online communication where you share status messages in 140 characters - and no more than 140. It's sharing in snippets; it's microblogging.  It's borderline annoying because you end up completely over sharing ("I thought about eating a ham sandwich in the alleyway ... but then didn't."), but it's a very unique, very real-time, very insightful way of connecting with people. 

  • Why would I want to share these details online?  That's a really good question.  Some people are very comfortable sharing details of their life, and links to things they think are interesting, which is where Twitter comes in.  It's like an RSS feed for your brain, and it helps lead you to new info on topics that interest you and from people who do the same.  (If you're concerned about privacy, you can always keep your account "locked" instead of "public.")
Hashtag central
Diabetes-related hashtags include word/phrases as obvious as "diabetes" but may also include things like "#ffl11" and "#sweatabetes."
  • What is a Tweet?  A Tweet is one, single status update from a Twitter account.  Oh, and it's also the sound that a bird makes.  
  • What is an @reply?  When you put the "@" symbol in front of someone's user name, it tells that person that the Tweet is directed at them.  It's like sending a 140 character email, in public.  (Also, you know if a Twitter account is shifty when they don't have any @replies and/or aren't following anyone.  Twitter is a conversation, not a billboard.)
  • What is a DM?  A DM (or "direct message") is a 140 character private message that you can send to a fellow Twitterer.  You can only direct message people who are following you back.

How do I join, and what do I do there?  To sign up for a Twitter account, go to Twitter and register.  You'll sign up, you'll be shuffled to your homepage, and there you can post your first status update, find people to follow, or just lurk on other people's accounts.  

So I'm on Twitter.  How do I find my fellow PWDs?  Okay, so once you're on Twitter, now you can dive Tweet-first (?) into the diabetes community there.  Finding your fellow PWDs can seem challenging, but there are tricks to help you sniff out the pancreatically challenged and those who support them. 

  • You can use Twitter Search to seek out the diabetes community by searching for specific search terms or hashtags.  Try searching for something as simple as "diabetes," or something as specific as "Dexcom."  You can also conduct searches right on the Twitter homepage, like for "diabetes."

  • You can also use the mother of all diabetes hashtags:  #dsma.  "#dsma" stands for Diabetes Social Media Advocacy, and it's the brainchild of Ms. Cherise Shockley.  On Wednesday nights at 9 pm EST, hundreds of people with diabetes log on to their Twitter accounts and crowdsource answers to questions asked by the DiabetesSocMed Twitter account
It's pretty simple:  The @DiabetesSocMed account asks questions and numbers them, and then when people respond, they just answer with the question number and the #dsma hashtag in their Tweets.  For example:
An example of the #dsma Twitter discussion questions
There's the question (Q1) and my answer, tagged with both "Q1" and "#dsma."  The only trick is that during the actual #dsma chats, there are many participants, so there are many questions and answers streaming at once.  It can be a little overwhelming at first, but after a few run throughs, you'll be a pro.
  • And even though you're using Twitter, you aren't limited to using "just Twitter" to send out or read your Tweets.  There are a lot of third-party applications for Twitter that you can download to your desktop or use a browser for.  Here are a few of the ones I use:
  • Tweetdeck.  This is my favorite application and the one I use most for Twitter.  It's clean, easy to use, and runs pretty seamlessly on my laptop.  
  • Seesmic.  I used to use this one all the time, but I kept blowing out my API.  (What does "API" stand for?  Available Peanut Index?)  Seesmic can also be used to update your Facebook and Twitter status, so it's kind of handy for all things social media.  (Tweetdeck can, too, actually.)
  • TweetChat.  This is a web application where you can type in the specific hashtag you want to follow (for example: #dsma) and all of the Tweets tagged with that hashtag stream on the TweetChat page. 
  • Twitpic.  This app helps you share photos on your Twitter feed.  You can take photos on your phone or upload them from your desktop and ship them straight to your Twitter stream.  (There is also a pile of apps for Twitter using your smartphone, but I know what I know, and I have no idea which ones are good or bad.  Consult your local TechNerd for some details and a cupcake.)

Phew!  Crash course on Twitter and finding your fellow PWDs?  There's at least a start.  I hope this helps, and if you're looking to jump right in, you can join the #dsma chat tonight at 9 pm - the only thing we're missing is YOU.  Join the 140 character conversation ... and make sure you have coffee on hand.  It's the most whirlwind hour of diabetes discussion on the web. 

(And I'm adding a diabetes Twitter list to the blogroll page, so if you're a PWD with an active Twitter account, leave your Twitter handle in a comment and I'll add you to the list!  You can find me on Twitter at @sixuntilme.)


Great Twitter tutorial, Kerri
we tend to forget that social media especially twitter is so fairly new that not many people know how to forge a community connection after signing up.
mines @RonnieGregoryM thanks

This is an excellent intro for Twitter noobs. Great post, Kerrie!

Kerri, this is great and long overdue. Thanks for putting in so much effort. Don't forget about Tweeps - people who use twitter.

Also, the twitter.com interface is primitive. Folks can use other tools like Brizzly, Tweetdeck, TweetCast on Android (3 I've used, there are lots more) to help them keep track of conversations, group people they follow, etc.

Kerri -

Great post on Twitter and it's functionality. I also now fully understand what happens on Wednesday night at 9:00 PM when I see the #dsma hashtag in every other tweet I receive!!

Oops, didn't notice you mentioned TweetDeck. My twitter handle is @bernardf, also @diaboogle.



@PortblPancGrl :)

Another way of finding at least *some* other PWDs is by joining Twibes. There is a "diabetes" twibe. What Twibes really does is it looks for the twibe's hashtag at the end of tweets meant for that community. So all tweets marked #diabetes from members of the Diabetes Twibe will be posted to that twibe's timeline.

FWIW, I use TweetDeck on both Android and iOS (iPod in this case). The mobile versions don't support TweetDeck groups, only Twitter lists, so if you have a lot of time and energy invested in TweetDeck groups, you may need to re-curate.


I just learned a few things and I've been tweeting for a while now so THANK YOU! @GG2Diabetes

You were one of the first PWDs that I found online... way back when I was trying to figure out what that whole Twitter thing was all about. This would have been very helpful (in that very meta way).


I have had a Twitter account for a while now but really had no idea what to do with it. This helps a lot!
My handle is @TX_Dani

I found twitter through you, then went and looked at the people you followed. Also a good way to find the D-OC.


Thanks for the tutorial, very well written for those of us who are a little less computer savy!

I never understood the purpose of Twitter until I found the DOC on it...


Great intro to twitter post.

Thank you for this! I knew most of it, but seeing it written out makes it seem simpler than my brain was letting on.

I'm on Twitter, I'm a bit of a rookie...but you have inspired me to jump into #DSMA soon. Thank you!

I'm @our3Dlife

I have followed your blog for years, and just now have started talking about my own experiences with diabetes. I sometimes update my twitter, but I'm not a daily or weekly presence...still, I would love to be part of the list. I enjoy reading about and talking to others with diabetes.



i was LOST when i first joined twitter, but now i'm an old pro ;)

and i love new #DOC friends!!



aw yeah, this is much more informative and helpful than my blurted out A HASHTAG IS LIKE THE POUND SIGN. cheers!

This post has made me get a Twitter account... Whether that's good or bad, I'm not sure yet. :P

Perfect explanation.

I would suggest anyone new to #dsma chats to mention that at the beginning of the hour. You will have many new followers quickly!


Yay for social media support! I'm @erinese

Love the straightforward approach to the wide world of the DOC on Twitter. Can't lie though: you definitely convinced me to start my account and my blog cause you're just that awesome.




Great job and thanks for helping any newbees. See my URL for my Diabetes Support Daily that is free and can be subscribed to ( sent to your e-mail) for those who do not check their twitter account often.


@tabulous. :)

I just joined a few weeks ago, and I'm so glad for this post...I was feeling lost (and as result, older than my 27 years...).

My handle is jana_beck

I'm @qaqueen. :)


Such a fun session to attend!

Twitter and social media can be a great outlet for people to use. This has proved as a valuable tool for myself. I use hootsuite for twitter and it works well + it helps me keep on top of whats going on!

This rocks. Wish I could have been at FFL and gone to you&Scott's session!


This is excellent reference material for the Twitter newbies, but also nicely summarizes it for any future discussions. I talked about some of these I blogged about what these did, and also noted that the ancillary applications designed to work WITH Twitter are growing as fast as Twitter itself, and gave some explanations for some of the "ancillary applications" including a few you left out such as web-address shortening applications (including bit.ly and tinyurl.com just to name two of the more popular ones) which enables users to fit web links into the 140 character limit. In all, I'd say this was an excellent primer!! Thanks for sharing with everyone.

Thank you for this. I found this all useful and feel tonight's #dsma will be a record setter! Soon it will be a "trending" topic!

This is great! Thank you for the info I am going to pass this on to people who need some extra help understanding twitter!

Don't forget about the diabetes nest!! http://diabetesnest.com/

I suck at twitter. I am not sure if it is my age or what. I tried one of the DSMA chat things once. I felt lost. It is FAST PACED.


Kerri, this is fabulous! I'm going to show it to my Mom in the hopes she'll finally understand Twitter. Can she call you if she has questions? :P

Just kidding. I wouldn't do that. She'll email you instead. ;)

Here's me on Twitter - @PrincessLdyBg

Great timing! I just got started on twitter for my nature photos and garden business! I love the idea of getting in touch with my fellow D's too! I've added you Kerri and now I need to track all the rest of you down! @pottedteakettle

This is awesome!

I'm @sugar_nova (justicesmisbehavingpancreas.blogspot.com)

I am in love with the computer screen and the way you explained twitter! thank you for including #dsma in your lovely twitter guide.

:) @cerichards21 :) I can't wait to see if I'm not following someone. I love finding new people. :D

6pm on a Wednesday night is a horrible time for me, but I love DSMA when I do catch it! @candidcrafts is where you can find me. part crafting, part diabetes, part everyday life...


I'm @ArdensDay from www.ardensday.com, blogging about parenting a child with type I.

Say hello!

Twitter is a fantasic tool for type I support and much more!

Thanks for the great explanation; I've tried to follow along with some of the #dsma conversations, but haven't jumped into one yet. Maybe next week I'll be brave enough! :)


@acousticmess :)

Great post! Sadly, I'm unable to participate in #dsma as it takes place in the middle of the night for me, but I do try and keep up with what has gone on! I am known as @ThreeSows in the Twitterverse!

Hi vry interesting blogs


Hi Kerri

That is a fantastic Twitter you have delivered.

One to share for sure, thank you!

@elgringoinspain - by the way 【ツ】

@jason_turner you friendly neighborhood guinea pig - Islet Tx patient - Insulin Free!!

Hope this doesn't sound like a dumb question (I've never used twitter) - what if you don't have a smart phone. Can you use twitter via internet? Any guidance/advice appreciated. New to this. Thanks!


Remember that time when I blew your mind by showing you how to use tweetchat.com during #dsma. Automatically added hashtags FTW :)

I have fallen off the Twitter wagon but trying to climb back on again


hootsuite is also good one.. my twitter handle is @diabetic365

@NinjaLimaBean is me!

@supercandthed is me!

@nikkidefalco from Diabetes Sucks...

Great post!

@LauraKaiser. I need more diabetic twitterer friends!

Thank you!!

@Dream4Muse yo :)

@sstrumello is me




Great, Kerri! I'm @beatt2diabetes

thanks for doing this!


yay kerri! whew! that must have taken a while! :)


@imamandalynn and @HealthEdDesk


Great blog as always.





Please add me to the list @DivBodyButter



I'm not on this list and I'm so horribly offended by it I might just go cry about it. Add me please @iamsquee http://cslifewithd.blogspot.com

please add me : )

thanks! @SamGellman

Don't tweet much but when I do it's @araby62. Thanks Kerri!

I'd love to be added!




Thank you for this post!! I've been a lurking for a while and now starting to fb and twitter. Please add me to whatever.... Twitter name is Tracyselle

Oh! And I think you're simply adorable. Your little birdie is, too. You're a good mom. 

Please add me to the list! @ilanalucas



Your site is awesome!

Please add @diatribenews to the list, thanks!

Please add me!


Please add me to the list!
Thank you!

Please add me to the list!!

Thanks for doing this!

Please add these!


I enjoyed meeting at the social media session @ #FFL11. I'd love to be added to the Twitter list too -


Thanks for all you do!!!





Hi Kerri, Thanks for the list.


Hey Kerri, please add me to the list. Thanks a lot! Also this is the best "how to" on how to use twitter.


Ugh, I signed up for twitter a long time ago but am just getting into really trying to use it. I've been following you and Arnold_and_Me for months and I'm always interested in the dsma chats. Just afraid to sit down at the computer and try it out. Is there a way to follow the replies on tweets? I thought I could do that when I originally signed up but don't see a way now. When something really interesting is posted I would love to see the replies. I feel like I'm missing out on some good life lessons to help me deal with my daughter's diabetes. :-) Also, I don't like my twitter name, it's based on a nickname from high school and since 95% of my twitter is diabetes related I feel like I should have some cool diabetes mom nickname. LOL!


I'm @mediacrity on Twitter! I've sort of fallen out of touch with the DOC because I've been so busy, but I'm still around!

Please add us to the list! Thank you! @uckdc

I'm really trying to like Twitter. But I need diabetes buddies. Sign me up.


Hi Kerri,

Is it possible to add @MGHDiabetesEd to your list?

Awesome! Can you add me @Erin63i? I

Great post!

Please add me to the twitter list:


Fantastic post Kerri! I have never known so many people with type 1 diabetes until I joined Twitter where I'm @andrewcanet

Great post! You can find my diabetes/emergency management posts @tellab77


Hey Kerri! Changed my twitter username to match my NEW BLOG -- Today 01/3/2012. Focus: Research, Human Clinical Trials and Living with Type 1d.



Thank you for this post, Kerri. It answered a LOT of questions I had about Twitter and Diabetes. Definitely explains things better than my "Twitter for Dummies" book, which, yes...I actually bought. My twitter username is: @diabetessoul
Thanks! Janet

Thanks for the tutorial! I'm fairly new to Twitter and it can be a bit overwhelming! I LOVE #DSMA chats! I think I'll check out TweedDeck since I seem to be missing something on the Twitter website. It seems clunky. I'd love to be added to your Twitter list: @SweetenedKate Thanks!


#Thanks,Kerri :)

Kerri, you are so clever. "dive in Tweet-first"

Please add me

i love twitter! finally started using it more at FFL11. such fun...

Please add me to the list! :)

Great post! Please add me to the list:


I'd love to be added to the list! I'm new to twitter and am adding as many d-people as I can find!


Hi Ladies! I've had type 1 diabetes for almost 22 years now...but am new to the online community, Twitter AND Blogging! I'd love to be added to your list and get involved as much as I can. Thanks!


I somehow missed this post the first time around but have linked back to it. I don't tweet a ton and not always about diabetes related stuff but I do use twitter primarily for keeping up with the DOC and diabetes news. Please add me to the list.

Add me.


T1D dad.

JDRF Mentor.


T1 from Melbourne Aus.
I read a lot of everyones finest work already so love to be involved.

Still trying to navigate my way through the muddy waters ... But getting there slowly.


Mum of T1


I'm fairly new to twitter, but I actually found your blog a couple months ago, then saw you on twitter when I signed up. This is really helpful, Thanks!

And now we are on the cusp of #OzDOC :)

Exciting days ahead for people living with all types of diabetes.

T1 25+ years
Consumer advocate


I would love to me on the list!


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