Would you like to make a donation for CRPS research? To help change the life of a newly diagnosed CRPS patient, or help further the understanding of the disease among the medical community? To enable American RSDHope to continue its mission of spreading awareness of the most sinful form of chronic pain that exists today?
We in the CRPS community have made great strides in recent years, more people know about and understand the disease than at any time in the history of our disease but we still have miles to go before we sleep. We still have so much to do, so many patients suffer every day, spend years without a diagnosis, get incorrect treatment resulting in a spreading of the disease and unnecessary agony.
We don't have a cure yet but we do have some treatments that can reduce the pain and make the life of a CRPS patient more enjoyable and mainstream. Patients and their loved ones need to know that people care about them and their lives, their futures.
Help us in our mission and donate today. Every dollar counts. Thank you to everyone who has supported American RSDHope over the last 19+ years and enabled us to help and save so many patients, so many friends. Thank you to everyone who donated their time as well for fundraisers, running support groups, volunteering as mentors, making phone calls and sending emails, and a host of other tasks. Without all of you we could not do what we have done these last two decades.
Mahatma Gandhi once said, "The best way to find yourself is to lose yourself in the service of others."
CLICK HERE TO DONATE TO CRPS
Peace,
Keith Orsini
American RSDHope
www.rsdhope.org
Monday, July 7, 2014
American RSDHope announces two new ways to shop, save, and donate to CRPS!
Hi Everyone - We have another location in which you can donate to American RSDHope. And, as said in the message below, these donations give us the ability to fund research to help search for a cure and new treatments .
Check out the Cover Page for AMERICAN RSDHOPE to see the links for FIRST GIVING and Amazon's new SMILE shopping program!
Here is the link!
Check out the Cover Page for AMERICAN RSDHOPE to see the links for FIRST GIVING and Amazon's new SMILE shopping program!
Here is the link!
UK lawyer wins huge payout for CRPS patient!
UK Lawyer Wins Huge Verdict For CRPS Patient
Brian Barr has won a settlement of over £905,000 ( $1.5 Million in U.S. funds) for 44 year old Neil Swift, who developed Complex Regional Pain Syndrome (CRPS) after an accident.
Neil Swift was an HGV driver for a Civil Engineering Company. On 25 July 2010 he returned to the Company yard, only to find a JCB blocking the entrance. His Manager asked him to move the JCB so he could put his HGV in the yard. The JCB had been vandalised and its windows smashed. Neil climbed up the steps on the driver’s side of the cab but was unable to unlock the damaged door from the outside. He attempted to reach inside through the broken window to unlock the door but, as he did so, he slipped and cut his left arm badly on protruding pieces of broken glass.
In the incident Neil damaged his radial artery, median nerve and flexor tendons. He developed CRPS for which he underwent a median nerve block, Guanethidine blocks, physiotherapy, Pain Management, a Sympathectomy and a nerve graft.
Sadly, Neil has been left with a virtually functionless left arm and hand. He is right handed. He has not been able to work since the accident.
Neil Swift was an HGV driver for a Civil Engineering Company. On 25 July 2010 he returned to the Company yard, only to find a JCB blocking the entrance. His Manager asked him to move the JCB so he could put his HGV in the yard. The JCB had been vandalised and its windows smashed. Neil climbed up the steps on the driver’s side of the cab but was unable to unlock the damaged door from the outside. He attempted to reach inside through the broken window to unlock the door but, as he did so, he slipped and cut his left arm badly on protruding pieces of broken glass.
In the incident Neil damaged his radial artery, median nerve and flexor tendons. He developed CRPS for which he underwent a median nerve block, Guanethidine blocks, physiotherapy, Pain Management, a Sympathectomy and a nerve graft.
Sadly, Neil has been left with a virtually functionless left arm and hand. He is right handed. He has not been able to work since the accident.
Check out the complete article on our website here
Donating to websites online or buying items online
Unfortunately, some of us have been victims of someone soliciting funds for a cause. We want to remind you before you buy something from, or donate to someone stating they are giving some of those funds to a specific charity, a 501(3)(c), such as American RSDHope, RSDSA, etc., that you confirm with the organization receiving funds that it's true. Or that there is a legitimate connection between the "donator" and "donatee." Call the organization, email them, and make sure BEFORE you buy or donate that there is indeed a legitimate connection there.
We don't like to think that someone would want to cash in on a disease, but we have all seen it in the news. Just be informed.
If you want to be sure that someone is raising funds for American Rsdhope you can email us or you can call us at (207) 583-4589. You can also visit our CONTACT US page on our website.
I am sure you can contact the RSDSA via their website , www.rsds.org , if the person raising the money says they are doing so on their behalf.
Thank you everyone!
Peace,
Keith Orsini
American RSDHope
www.rsdhope.org
We don't like to think that someone would want to cash in on a disease, but we have all seen it in the news. Just be informed.
If you want to be sure that someone is raising funds for American Rsdhope you can email us or you can call us at (207) 583-4589. You can also visit our CONTACT US page on our website.
I am sure you can contact the RSDSA via their website , www.rsds.org , if the person raising the money says they are doing so on their behalf.
Thank you everyone!
Peace,
Keith Orsini
American RSDHope
www.rsdhope.org
Simulating a block by having your foot fall asleep -email questions
I have never heard of doing that and I am not sure how that would work.
Sorry it took so long to respond, we have had an inordinate number of patient emails sent to our our website.
In the future, if anyone has any questions for me or anyone at American RSDHope they will get answered much more quickly if you email us directly at RSDHope@mac.com
We get about 150 emails per day between us and typically patients get a response within a few days, we try our hardest. We also make sure not to get behind so we respond as quickly as we can . They can really pile up if you don't!
Thank you to everyone who writes in to tell us how much they have enjoyed our website, how much it has helped them. We greatly enjoy hearing the feedback and knowing that what we are doing works. Our website is approaching 17 million visitors this year, 2014, and next year will mark twenty years that American RSDHope has had their doors open. It hasn't always been easy, physically or financially, but with all of you helping us we have made it.
Have a wonderful week!
Peace, Keith Orsini
American RSDHope
www.rsdhope.org
Sorry it took so long to respond, we have had an inordinate number of patient emails sent to our our website.
In the future, if anyone has any questions for me or anyone at American RSDHope they will get answered much more quickly if you email us directly at RSDHope@mac.com
We get about 150 emails per day between us and typically patients get a response within a few days, we try our hardest. We also make sure not to get behind so we respond as quickly as we can . They can really pile up if you don't!
Thank you to everyone who writes in to tell us how much they have enjoyed our website, how much it has helped them. We greatly enjoy hearing the feedback and knowing that what we are doing works. Our website is approaching 17 million visitors this year, 2014, and next year will mark twenty years that American RSDHope has had their doors open. It hasn't always been easy, physically or financially, but with all of you helping us we have made it.
Have a wonderful week!
Peace, Keith Orsini
American RSDHope
www.rsdhope.org
Sunday, March 16, 2014
RSD or CRPS? I still want to call it Reflex Sympathetic Dystrophy!
I want to continue calling our disease RSD or Reflex Sympathetic Dystrophy, not CRPS or Complex Regional Pain Syndrome. Do I have to make the change????
I thought I would post this short answer here because we are still getting this question here at American RSDHope and not only from patients but also from family members, some medical professionals, and even from some patients who run support groups.
Some people are still clinging to the old designation "RSD" with the last few ounces of strength in their body and refuse to make the change. Well, guess what? You just don't have a choice.
It's kind of like when you work with children in the school system and it is time to read. They will invariably tell you, "But I don't want to read."
"Well guess what? You don't have a choice here. kiddo ;-)"
Actually we try to explain to them how important it is to read, how much it will help them in 2nd., 3rd. and 4th. grade, etc. but you get the idea. We try very hard to never say what your parents did growing up, you all know what I am referring to.
But just because you don't want to do something, doesn't mean that is the way it's going to be.
Unfortunately we can't throw the "Because I said so!" at everyone in the CRPS Community who asks "WHY do I have to call it CRPS?". It just won't work.
The same holds true for deciding what to call our disease.
I can understand wanting to stick to the old name. We all got used to saying “RSD”, we started to get some traction with the public with that name, it also sounded a lot better than CRPS sounds. That sounds like, “Hey I have craps!” Who wants to say they have craps? Yuck!
But because any of us, you, me, anyone who deals with CRPS patients, must help them, we must use the correct and current terminology.
The current and correct terminology says the name of the disease is COMPLEX REGIONAL PAIN SYNDROME, TYPES I AND II, so that is what we must call it. Period. End of story. We don’t get to pick and choose which parts of this disease we want to follow and which we want to ignore. If that were the case I don't think there would be ANY patients who would check off the box "most severe form of chronic pain know to man".
In fact though it is two very distinct types, Types I and II. CRPS Type I, formerly RSDS, and Type II, formerly Causalgia. They have very different and distinct etiologies, are diagnosed differently, and need to be treated very differently and obviously have very different outcomes. There are some methods of treatment that will never work on Type II for instance that will many times work for Type I , because of the severe nerve damage that Type II involves.
For more information on the difference between the two types of CRPS please visit our website by clicking on American RSDHope or visit our main page HERE , click on the link above.
For these, and other reasons, the name change was made back in 1985. It did take longer for some parts of the medical community to make the switch, especially the Physical Therapy community, but the switch was vital in order to better diagnose, treat, and care for CRPS patients. So while it may seem like the same old illness the name change was necessary and the distinction was much needed, and not only has the medical community made the change but so has SSD, WC, and all of the coding.
There are still some out there in the medical community who have not made the change and it is one way to determine who is current in their medical reading, research, and treatment and thinking of our disease. Help us help them get current. Refer them to American RSDHope's website or the RSDSA's website so they can learn what you now know.
Now we even have a brand new medication coming out that has been developed for CRPS, neridronate, that has a 100% success rate of placing CRPS Type I patients into remission. It does not work on Type II patients. If you research “new RSD medication” you may not find it but it will pop up in many different locations with a search of “new CRPS medication". Imagine missing this news because you stuck to your guns and only dealt with this disease on an RSD basis? Or if you wanted to make sure you got the latest news on your disease but only searched for "RSD Information" instead of "CRPS information"?
We all fought it in the beginning. We ALL did, myself included. But that battle ended many years ago and we lost. The name change was a done deal, we need to move on.
Please understand it isn’t simply me being obstinate or ornery. It is a necessary thing we must deal with every day and anyone who deals with, instruct, assists patients must make the switch in their heads for the reasons stated above.
Only a few weeks ago Jim Broatch (of the RSDSA) and I had this very discussion with some of the leaders of other medical organizations from around the country at a meeting that our two organizations co-hosted in Philadelphia, so you aren’t alone if you still want to hold on to the old “RSD” designation, but you need to jump on the CRPS train quickly. It has left the station and will soon be rounding the bend and out of sight!
I hope that clears things up?
Keith,
American RSDHope
I thought I would post this short answer here because we are still getting this question here at American RSDHope and not only from patients but also from family members, some medical professionals, and even from some patients who run support groups.
Some people are still clinging to the old designation "RSD" with the last few ounces of strength in their body and refuse to make the change. Well, guess what? You just don't have a choice.
But I don't wannu
It's kind of like when you work with children in the school system and it is time to read. They will invariably tell you, "But I don't want to read."
"Well guess what? You don't have a choice here. kiddo ;-)"
Actually we try to explain to them how important it is to read, how much it will help them in 2nd., 3rd. and 4th. grade, etc. but you get the idea. We try very hard to never say what your parents did growing up, you all know what I am referring to.
But just because you don't want to do something, doesn't mean that is the way it's going to be.
Unfortunately we can't throw the "Because I said so!" at everyone in the CRPS Community who asks "WHY do I have to call it CRPS?". It just won't work.
The same holds true for deciding what to call our disease.
But It’s what I am used to and I prefer that name to CRPS!
I can understand wanting to stick to the old name. We all got used to saying “RSD”, we started to get some traction with the public with that name, it also sounded a lot better than CRPS sounds. That sounds like, “Hey I have craps!” Who wants to say they have craps? Yuck!
But because any of us, you, me, anyone who deals with CRPS patients, must help them, we must use the correct and current terminology.
The current and correct terminology says the name of the disease is COMPLEX REGIONAL PAIN SYNDROME, TYPES I AND II, so that is what we must call it. Period. End of story. We don’t get to pick and choose which parts of this disease we want to follow and which we want to ignore. If that were the case I don't think there would be ANY patients who would check off the box "most severe form of chronic pain know to man".
Two Distinct Types
In fact though it is two very distinct types, Types I and II. CRPS Type I, formerly RSDS, and Type II, formerly Causalgia. They have very different and distinct etiologies, are diagnosed differently, and need to be treated very differently and obviously have very different outcomes. There are some methods of treatment that will never work on Type II for instance that will many times work for Type I , because of the severe nerve damage that Type II involves.
For more information on the difference between the two types of CRPS please visit our website by clicking on American RSDHope or visit our main page HERE , click on the link above.
For these, and other reasons, the name change was made back in 1985. It did take longer for some parts of the medical community to make the switch, especially the Physical Therapy community, but the switch was vital in order to better diagnose, treat, and care for CRPS patients. So while it may seem like the same old illness the name change was necessary and the distinction was much needed, and not only has the medical community made the change but so has SSD, WC, and all of the coding.
There are still some out there in the medical community who have not made the change and it is one way to determine who is current in their medical reading, research, and treatment and thinking of our disease. Help us help them get current. Refer them to American RSDHope's website or the RSDSA's website so they can learn what you now know.
New Medication Coming specifically for CRPS Type I soon!
Now we even have a brand new medication coming out that has been developed for CRPS, neridronate, that has a 100% success rate of placing CRPS Type I patients into remission. It does not work on Type II patients. If you research “new RSD medication” you may not find it but it will pop up in many different locations with a search of “new CRPS medication". Imagine missing this news because you stuck to your guns and only dealt with this disease on an RSD basis? Or if you wanted to make sure you got the latest news on your disease but only searched for "RSD Information" instead of "CRPS information"?
We all fought it in the beginning. We ALL did, myself included. But that battle ended many years ago and we lost. The name change was a done deal, we need to move on.
Please understand it isn’t simply me being obstinate or ornery. It is a necessary thing we must deal with every day and anyone who deals with, instruct, assists patients must make the switch in their heads for the reasons stated above.
Only a few weeks ago Jim Broatch (of the RSDSA) and I had this very discussion with some of the leaders of other medical organizations from around the country at a meeting that our two organizations co-hosted in Philadelphia, so you aren’t alone if you still want to hold on to the old “RSD” designation, but you need to jump on the CRPS train quickly. It has left the station and will soon be rounding the bend and out of sight!
I hope that clears things up?
Keith,
American RSDHope
 |
| Nat'l CRPS Awareness |
Subscribe to:
Posts (Atom)
