Official CRPS Or RSD Awareness Ribbon
How Did The CRPS Community Decide On The Color Combination ?
By Keith Orsini, Director and long-term CRPS Survivor
Is the CRPS Awareness Ribbon Red, Yellow, Orange, Purple? Or is it the Multi-colored Flame ribbon displayed on the American RSDHope website? How was the choice made? How can individual patients help spread CRPS Awareness? These are questions we sometimes get asked at American RSDHope.
Let me clear up the confusion and explain how it all came to pass that the RSD and CRPS Community acquired its' very own Awareness ribbon many, many years ago, almost 15 years now!
A time long, long ago. In a galaxy close to home ….
No, seriously.
There is an official CRPS and RSD Awareness Ribbon. YEAH! WHOOPEE! There has been for a long time but don't feel badly if you didn't know. You would be shocked if you learned how many physicians in this country still have no idea what our disease is all about and that's their job ;-)
You can see it by CLICKING HERE. It is also displayed on the cover page of the American RSDHope website and thousands of other webpages, Face Book pages, as well as everything from professional race cars and speedboats to horse blankets and awareness brochures. Patients and their loved ones have had it tattooed on their bodies, and wear it proudly on their shirts, sweatshirts, cars and trucks.
How did the multi-colored flame ribbon come to be? It is an amazing story of cooperation really. Approximately fifteen years ago the CRPS and RSD groups across the country, including American RSDHope, held a many-months long discussion and voting process to decide what color we should have as our official national CRPS Awareness ribbon. These groups included groups that met in person as well as those that met in on-line chat-rooms and listservs. It was not an easy process as you can imagine. We were communicating with so many different people, some via the internet and some not. We had patients from all over the country talking in chat rooms, discussing it in their monthly support groups, and many patients simply wrote to us directly, sharing their feelings.
Many colors were suggested in the early stages of course; everything from red to yellow, purple to orange, yellow to blue. It was obvious that we had to first make a list of what the many different color ribbons stood for and go from there.
When we did, we learned that many colors had a VERY LARGE number of diseases or causes already associated with them; such as orange, red, and purple.
Orange ribbons: This is the color Awareness Ribbon for not only MS (Multiple Sclerosis), but also Leukemia, Muscular Dystrophy, Malnutrition, ADHD, and several types of Cancer among other things. Those are pretty big causes with lots of years of awareness behind them.
Red ribbons: AIDS awareness and Heart disease.
Purple ribbons: Suicide Prevention, Lupus, Crohn’s Disease, Testicular Cancer, Animal Cruelty, Drug Overdose, Fibromyalgia, and many others.
There may be others out there that someone has suggested for CRPS or RSD Awareness but you get the idea. The other colors suggested were simply more of the same, that is, already being used by other causes.
We decided to take a different tack entirely. We asked everyone what they wanted the Awareness Ribbon to say, what symptoms they wanted the ribbon to represent, or what aspect of the disease, or what message did they want it to convey? What did we want people to look at the ribbon and see? Think about some of the ribbons out there now and think about what pops into your mind. For most people when they see an orange ribbon they think Multiple Sclerosis. When they see a pink ribbon they think Breast Cancer. When they see a red ribbon they think Aids Awareness. There are some causes that are extremely tied to their ribbons and that can be extremely beneficial when it comes to fundraising, events, publicity, etc.
We learned that most people wanted it to somehow stand for the color of the burning pain, to remind people of the FLAME, the burning we feel everyday. That tied in to the colors that people sent in but it was obvious we needed to look elsewhere since using one of the colors stated above would simply make us one of the many diseases lost in the colors. Many others wanted people to look at it and immediately think of CRPS, think of our name, our disease.
In the end we decided to design one of our own and when we did, the multi-colored Flame Ribbon you see here was born. We shared it with all of the groups, voted on it, and it was overwhelmingly YES in favor of adopting it as the Official National CRPS and RSD Awareness Ribbon.
Let me clear up the confusion and explain how it all came to pass that the RSD and CRPS Community acquired its' very own Awareness ribbon many, many years ago, almost 15 years now!
A time long, long ago. In a galaxy close to home ….
No, seriously.
There is an official CRPS and RSD Awareness Ribbon. YEAH! WHOOPEE! There has been for a long time but don't feel badly if you didn't know. You would be shocked if you learned how many physicians in this country still have no idea what our disease is all about and that's their job ;-)
You can see it by CLICKING HERE. It is also displayed on the cover page of the American RSDHope website and thousands of other webpages, Face Book pages, as well as everything from professional race cars and speedboats to horse blankets and awareness brochures. Patients and their loved ones have had it tattooed on their bodies, and wear it proudly on their shirts, sweatshirts, cars and trucks.
How did the multi-colored flame ribbon come to be? It is an amazing story of cooperation really. Approximately fifteen years ago the CRPS and RSD groups across the country, including American RSDHope, held a many-months long discussion and voting process to decide what color we should have as our official national CRPS Awareness ribbon. These groups included groups that met in person as well as those that met in on-line chat-rooms and listservs. It was not an easy process as you can imagine. We were communicating with so many different people, some via the internet and some not. We had patients from all over the country talking in chat rooms, discussing it in their monthly support groups, and many patients simply wrote to us directly, sharing their feelings.
Many colors were suggested in the early stages of course; everything from red to yellow, purple to orange, yellow to blue. It was obvious that we had to first make a list of what the many different color ribbons stood for and go from there.
When we did, we learned that many colors had a VERY LARGE number of diseases or causes already associated with them; such as orange, red, and purple.
Orange ribbons: This is the color Awareness Ribbon for not only MS (Multiple Sclerosis), but also Leukemia, Muscular Dystrophy, Malnutrition, ADHD, and several types of Cancer among other things. Those are pretty big causes with lots of years of awareness behind them.
Red ribbons: AIDS awareness and Heart disease.
Purple ribbons: Suicide Prevention, Lupus, Crohn’s Disease, Testicular Cancer, Animal Cruelty, Drug Overdose, Fibromyalgia, and many others.
There may be others out there that someone has suggested for CRPS or RSD Awareness but you get the idea. The other colors suggested were simply more of the same, that is, already being used by other causes.
We decided to take a different tack entirely. We asked everyone what they wanted the Awareness Ribbon to say, what symptoms they wanted the ribbon to represent, or what aspect of the disease, or what message did they want it to convey? What did we want people to look at the ribbon and see? Think about some of the ribbons out there now and think about what pops into your mind. For most people when they see an orange ribbon they think Multiple Sclerosis. When they see a pink ribbon they think Breast Cancer. When they see a red ribbon they think Aids Awareness. There are some causes that are extremely tied to their ribbons and that can be extremely beneficial when it comes to fundraising, events, publicity, etc.
We learned that most people wanted it to somehow stand for the color of the burning pain, to remind people of the FLAME, the burning we feel everyday. That tied in to the colors that people sent in but it was obvious we needed to look elsewhere since using one of the colors stated above would simply make us one of the many diseases lost in the colors. Many others wanted people to look at it and immediately think of CRPS, think of our name, our disease.
In the end we decided to design one of our own and when we did, the multi-colored Flame Ribbon you see here was born. We shared it with all of the groups, voted on it, and it was overwhelmingly YES in favor of adopting it as the Official National CRPS and RSD Awareness Ribbon.
That was more than a decade ago, almost fifteen years ago, and awareness has been growing by leaps and bounds and though we still have a long way to go, with every patient we grow a little bit more. With your help, we can keep that trend going!
Ever since we started, the jpeg of the ribbon has been made available to any individual or support group at no cost; to use on their websites, Face book page, e-mails, for fundraisers, for awareness specialties such as race Cars, racehorses, racing boats, tattoos, t-shirts, sweatshirts, you name it. Many have used it to raise research funds and many, many more
I am not really sure how it started but apparently a few years back the color Orange started appearing on the internet as an option for RSD Awareness. That was one reason we thought make it clear that yes, there already was an official CRPS Awareness ribbon. One that no other organization or disease has or can ever have!
I am not really sure how it started but apparently a few years back the color Orange started appearing on the internet as an option for RSD Awareness. That was one reason we thought make it clear that yes, there already was an official CRPS Awareness ribbon. One that no other organization or disease has or can ever have!
This is very important to creating awareness. The public sees our ribbon and they know instantly it is for CRPS and RSD Awareness, not one of many diseases, as happens with one of the other color ribbons that many diseases use. No one else can ever have the flame ribbon ;-)
Help us to keep spreading CRPS Awareness by educating the public about the disease and by using the official ribbon.
Listen, we have all worked very hard in the CRPS Community trying to raise Awareness of this diseases. We have all shared stories if our disease with friends and family trying to help more people realize how horrific this disease can be if not caught and reversed early enough. Some of the luckier ones have been able to get their stories told in their local paper, local news broadcast, national news, syndicated talk show, Twenty-Twenty, 60 Minutes, and more. Hundreds of thousands of CRPS brochures have been distributed from the two national CRPS organizations to all points of the compass, explaining in detail what this disease is all about.
There are groups across the country that hold seminars and conferences for patients, their loved ones, and medical professionals. Many of us have marched on and in Washington, DC and in our own local statehouses getting bills passed for National Awareness Day (November 5th) and 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 have held countless conferences over the years and workshops for research and continue to do so.
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.
This November, make it a point to begin your fight for CRPS Awareness. Make every day CRPS Awareness Day. Every month CRPS Awareness Month! Get the official CRPS Awareness Ribbon for yourself, your webpages, Face Book, 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 (November), and send out one fact about CRPS. You can learn more about Tonya's idea here. 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!
Thanks to you, each and every one of you.
Peace,
Keith Orsini
American RSDHope
www.RSDHope.org
Any questions, please submit them to RSDHope ;-)
Help us to keep spreading CRPS Awareness by educating the public about the disease and by using the official ribbon.
Listen, we have all worked very hard in the CRPS Community trying to raise Awareness of this diseases. We have all shared stories if our disease with friends and family trying to help more people realize how horrific this disease can be if not caught and reversed early enough. Some of the luckier ones have been able to get their stories told in their local paper, local news broadcast, national news, syndicated talk show, Twenty-Twenty, 60 Minutes, and more. Hundreds of thousands of CRPS brochures have been distributed from the two national CRPS organizations to all points of the compass, explaining in detail what this disease is all about.
There are groups across the country that hold seminars and conferences for patients, their loved ones, and medical professionals. Many of us have marched on and in Washington, DC and in our own local statehouses getting bills passed for National Awareness Day (November 5th) and 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 have held countless conferences over the years and workshops for research and continue to do so.
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.
This November, make it a point to begin your fight for CRPS Awareness. Make every day CRPS Awareness Day. Every month CRPS Awareness Month! Get the official CRPS Awareness Ribbon for yourself, your webpages, Face Book, 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 (November), and send out one fact about CRPS. You can learn more about Tonya's idea here. 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!
Thanks to you, each and every one of you.
Peace,
Keith Orsini
American RSDHope
www.RSDHope.org
Any questions, please submit them to RSDHope ;-)
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