Shoutouts for the online RA and autoimmune community
Written by Daniel P. Malito on September 8, 2013
So, here we are, folks, the brand new CreakyJoints website is up and running! It is cause for celebration, make no mistake as CJ has been a net destination about autoimmune illness for many years now! I have been privileged enough to be on the team for almost five years, but Seth and the crew has been doing their best to make the plight of autoimmune disease a household cause for much longer than that.
Recently, due to the impending release of my autobiography, the launch of my website www.danielpmalito.com and my new-found interest in Twitter, I have discovered many diverse members of the online R.A. and autoimmune community. This column, I want to take the opportunity to make you aware of some of the great people and places out there that are helping to further our cause. Now, don’t worry if I don’t mention you, this is not going to be the only time I write a column such as this. We have to start somewhere, though, so here goes!
First, I want to mention an interesting man I just met. His name is Vadim, and he is an inventor. Also a biomechanical engineer and a patent attorney, Vadim specializes in inventing assistive devices for those who have Rheumatoid Arthritis and other disabling diseases. His first project is called the EasyFork, and he will be launching a kickstarter campaign very soon. (Don’t worry; we’ll let you know when it goes live.) I don’t want to give away too much, but sufficed to say that most adaptive utensils haven’t changed in over thirty years. Vadim aims to make his EasyFork something that will require almost no movement to use. This is a far cry from the 50-80 degrees of motion today’s specialized utensils require. It’s great to know that there are people out there who see arthritis as the serious disease we all know it is! You can check out Vadim’s website at www.easyfork.net once it goes live.
As I said, I am a full-fledged member of Twitter now, and I have to say that I’ve connected with some amazing people. There are tons of R.A. and other autoimmune sufferers out there who provide support and inspiration each and every day through their feeds. Barb, a woman who lives in Surrey, England, always has some R.A.-related support to give on her feed @RAsucks. Heather is a mother of two with R.A. and Fibromyalgia, and she always has a bit of news, talk, or encouragement over @canbheather. Amy L. Stewart is a social worker from Dallas and a novice cook who has R.A. and never misses an opportunity to share the latest dish on arthritis over @ArthritisWalk. Lene Andersen is a CreakyJoints featured blogger who is also one of the lead writers over at www.myracentral.com and always has tons to say @theseatedview.
Kids and teens get arthritis too, we all know it, and we all know that most other don’t know it! Help spread the word over @ArthritisAndMe and @priscillae23. Some of the organizations out there helping to further research and spread information are @arthritis_ARC, @showusyourhands, @arthritiscare, and @arthritisdigest. If you are a member of Twitter, these feeds will keep you up to date with all you need to know about R.A., and if you aren’t a member, join now! It’s a fantastic place to get up to the minute info!
Now, these next people I have mentioned before, but I have to bring them up again. The Blue Ribbon Project, over at http://www.theblueribbonproject.org is one of the better movements out there. The goal of the group, as you can probably guess, is to make the blue ribbon the instantly recognizable sign of arthritis support. Just like the pink and the yellow, it’s time to have our cause become just as famous! Support them as much as you can, and wear a blue ribbon whenever possible!
Of course, there are the official sources of R.A. info like The Arthritis Foundation, The CDC R.A. page, and the Mayo Clinic’s R.A. information, but there are some other sites that you might not know about. There is, of course, the R.A. Warrior. Kelly Young has been an advocate for Rheumatoid Arthritis for years, and created the R.A. Warrior page in 2009. It’s a comprehensive place for clinical and personal information. The Rheumatoid Arthritis Guy website is a great place to follow along with a mid-30’s man who has R.A. You can see just how much someone with the disease can accomplish. As an FYI, RA Guy is also a Special Guest Blogger on CreakyJoints. RA Chicks is a great place online to get the woman’s view of living with autoimmune illness. Started by a few women who were all somehow suffering from and around R.A., it’s a great web destination to talk, read, and watch!
Of course, there are many, many, more places out there that are dedicated to the defeat of this horrible autoimmune disease. Most are just a Google search away. Again, please don’t get offended if I didn’t mention you this week, an, in fact, e-mail me or post on my Facebook page! I’d be happy to chat with all of you! Now, sit back, relax, and enjoy the new CreakyJoints website as we take the R.A. world by storm!