Every state passed an Awareness Proclamation proclaiming November as National CRPS Awareness Month and so 2015 was the biggest ever! Fortunately a new proclamation does not have to be signed every single year so 2016 is already taken care of! Yeah!!!!!!
If you helped ONE person learn about the disease CRPS last year, learn information that can save them from doing the wrong kind of treatment, help them better understand this mysterious disease they just learned they had, help them discover they are not alone and this pain and those weird symptoms they have been experiencing are all not in their head, then YOU my friend will have made a significant difference in the life of someone and that would have been a wonderful way to celebrate National CRPS Awareness Month! You may even have saved a life or two. NEVER underestimate the power of one!
Sometimes it is a teen patient and/or their friends going from classroom to classroom, or standing in front of the assembly, and explaining what CRPS was and how it impacted them. Now THAT was brave. Others have decided what they would do is send out ONE piece of information regarding CRPS each and every day to their friends and loved ones for the entire month of November. That's a whole lot of education!
FEEL FREE TO SHARE THIS PAGE OR ANY OTHER PAGE OF AMERICAN RSDHOPE'S WEBSITE TO PEOPLE YOU KNOW. APPLE COMPUTER? IPAD? IPHONE?
Just look at the top right-hand corner of the page for a little box with an arrow pointing to the sky. Click on that and it gives up options like, email this page, tweet it, bookmark it, airdrop, Facebook, and more.
Ok, corny I know but it is an easy way to share a page, bookmark it, tweet it, linked in, and whatever else has been added to the computing community since I last blinked. Those of us older than 55 went to college when they were just building "Computer Labs", and I still remember when my dad brought home this really cool computer game, back in early 1970, that my brothers and I played for hours on end, it was called "Pong", yes, it is dumb now but it was exciting then!
It just goes to show you how much times have changed. About six years after that games was invented I developed something new too; CRPS. My CRPS started in 1974 but it would be 19 years more before it was diagnosed, 1993. Then the following year American RSDHope was formed and as they say, the rest is history.
CRPS Awareness Month has been held in November for 18 years now (the same length of time the community has had a National CRPS Awareness ribbon) and we have made great strides in public awareness because of it.
So many patients have held awareness events; walks, talks, fundraisers, and many, many other Awareness events over the last ten or more years. Remember, even an article in your local newspaper can generate tremendous publicity for the cause of awareness so get out there and contact your paper and share your story. Your story is our story, your story is the story.
DOES IT MAKE A DIFFERENCE?
I know to some of you, especially some of the newly diagnosed, it may seem like no one knows anything about this disease and you may think "You have been holding awareness months for years now?" But if you talk to some of the CRPS patients who have been around the community for 8, 10, 15, 25 years and more they can tell you what it was like in the old days like 1993 or 1994! ha ha. Back when Prodigy and AOL ruled the internet.
Way back when you would say "I have Reflex Sympathetic Dystrophy" and they would look at you with a glassy eyed expression, "Is that like muscular dystrophy?" Or back in 1998 when our survey showed it took a patient seeing 10 or more Doctors before they got a correct diagnosis of CRPS and now it is down to as few as 3 or even 1 in many cases. Wow.
It didn't happen overnight and it didn't happen by accident. it happened because a LOT of patients worked very hard getting the word out, pounding the pavement, walking the halls of congress getting bills passed and work done on Social Security Disability even though they were on crutches/canes or in wheelchairs, walking in thousands and thousands of Doctors offices across the United States, holding hundreds of conferences, talking to reporters in every state in the country sharing their story.
These early patients also paved the way with bad or incorrect treatments, putting themselves through medication trials with the hope that down the road other patients would benefit one day. Just like the patients going through the Neridronate trials this year.
So when you see someone post on Facebook or in a chatroom how "no one seems to know about this disease" and "why hasn't anyone done something about it?", ask that person what they are doing to change that, explain how much has changed, and maybe suggest a way they can help and get involved. This community needs more and more volunteers all the time! Some of us who have been in the fight for decades are getting worn down and need to tap out to some of you newbies ;-D
History is full of examples of individuals changing the world simply by doing something. Life gives us all choices, CRPS just makes doing some of them a little harder.
There are groups across the country that hold seminars and conferences for patients, their loved ones, and medical professionals. Many of us have marched to, on, and in Washington, DC and in our own local statehouses getting bills passed for National Awareness Month (November); or getting SSDisability to accept CRPS as a disabling disease; or to provide an exemption for CRPS patients on Medicare so that they can get as much physical therapy as needed. The two national CRPS Organizations, and many, many state and local CRPS/Chronic Pain Groups have held countless CRPS conferences over the years and workshops for research and continue to do so. More work will undoubtedly be done by other individuals, other groups in the coming years as new people step forward and up ;-D
Awareness is something that requires constant CONCERTED and COORDINATED effort. That is why we have pushed so hard to get the official ribbon out to as many places as possible, as quickly as possible. It doesn’t matter if it is a bake sale at your local Walmart or an Awareness talk at your daughter's school. If you inform one more person, you have been successful.
Each November, make it a point to to really push for CRPS Awareness. In fact, why not make every day CRPS Awareness Day. Every month CRPS Awareness Month! Get the official CRPS Awareness Ribbon for yourself, your webpages, FaceBook, your emails, your families" pages and email. Get it for your friends and ask them to post it on their Face Book page! Get some CRPS Brochures and pass them around to your local physician's offices, hospitals (especially the ER departments), physical therapists, podiatrists, etc. Wear your CRPS Ribbon pin so people can ask you “What does that stand for?” Get one for your car, truck, RV, work vehicle, snowmobile, whatever, and spread the word!
As my friend Heather says, "Let's make every month National Awareness Month!" Then maybe, five or ten years from now, the CRPS Ribbon will be so well known that everyone will recognize it immediately.
What can you do, ONE PERSON, during National CRPS Awareness Month to make a difference? I am so glad you asked! Take a minute each day during National CRPS Awareness Month (every November), and send out one fact about CRPS to some people on your email list. If you enjoy doing it, continue the project by sending out one fact each week or every other week for the entire year. When you include a link for more information with your fact, eventually everyone will know all about CRPS! Head over to some of these sections to grab your Fact Of The Day;
WHAT IS CRPS?
WHAT ARE SOME OF THE SYMPTOMS?
WHAT DOES IT FEEL LIKE?
WHAT ARE SOME FAQ'S ABOUT CRPS?
LETTER TO FAMILIES & FRIENDS
CRPS INFORMATIONAL FLYER AVAILABLE IN A PDF FORMAT - JUST CLICK ON THE FILE BELOW!
If you would like a copy of a Flyer chock full of CRPS information that you can make copies of to hand out all over your town to help educate the average person, especially for those of you who cannot afford to buy 100+ brochures for instance, just click on the flyer below! You can now print it right from your computer! You have our permission to make as many copies of the CRPS Informational Flyer as you need. The only thing we ask is that you not change any of the information/facts listed there.
Thank you to each and every one of you.
Keith, Anjanette, and Lynne Orsini, and everyone at American RSDHope including all of our volunteers around the country thank you!
Twenty years in service to the CRPS Community,
PAIN TRACKING APP DEVELOPED BY CRPS DOCTOR
DOCTOR RONALD HARBUT DEVELOPS APP TO TRACK ALL KINDS OF CHRONIC PAIN SYMPTOMS!
ON SALE NOW FOR ONLY $2.99 ON ITUNES AND/OR HIS WEBSITE
I just wanted to pass on this piece of information and please know that we aren't getting paid for this in any way we just wanted patients to know about this really cool app that can better help them communicate with their Doctors about their pain.
It is a Pain Tracking App developed by a physician that REALLY knows all about CRPS, after all, he helped develop the ketamine infusion treatment that physicians all over the country are using today! His name is Doctor Ronald Harbut and you can learn all about this app, which he has put on sale for only $2.99 during CRPS Awareness Month, on his website; _NANOLUME by clicking here!