RSD - Nothing Left To Chance

Whether you call it Reflex Sympathetic Dystrophy Syndrome or Chronic Regional Pain Syndrome - it's still a hideous soul-sucking disease.

30.4.05

Please sign the petition!

RSDSA supports the American Chronic Pain Association's initiative to declare September, Pain Awareness Month.

Petition #918799248 - September as "Pain Awareness Month"

This petition will be submitted to the National Governors Association to make September "Pain Awareness Month." My goal is 5000 signatures, but I would love to have many more.

The petition is at - http://www.thepetitionsite.com/takeaction/918799248

The petition's goal is to make Americans aware of pain's impact on society and to promote the Pain Care Bill of Rights. Thank you for your support.

What isn't RSD?

"R"
"S"
"D"
Is it......?
Really Simple Discoverability
Roger Software Development
Radio Sailing Division
Remote Sensing Data
Russian Software Development
Recreational Sport Discussion
Route Server Daemon
Research Systems Diagnostic
Richland School District
Replay Serverside Demos
Refrigeration Supplies Distributor
Raven Shield Denmark
Recreational Scuba Diving
Resource Staff Draftsperson
Richmond Sound Design
Relative Strength Differential

I'm not being silly - no.

These are things that you find in a number of search engines when you type in the letters, "R" "S" "D" Although the disease doesn't deserve capital letters; I'll make an exception for this post.

Reflex Sympathetic Dystrophy needs to come out of the shadows and let the world know how we suffer.
http://www.rsdsa.org/
http://www.forgrace.org/

28.4.05

Pamidronate Research Study

Efficacy of pamidronate in complex regional pain syndrome type I.

Robinson JN, Sandom J, Chapman PT.
Pain Management Centre, Burwood Hospital, Christchurch, New Zealand. jon.r@xtra.co.nz

OBJECTIVES: Complex regional pain syndrome (CRPS), formerly known as reflex sympathetic dystrophy (RSD), is a painful, disabling disorder for which treatment is difficult. The aim of this study was to determine the efficacy of pamidronate in a double-blind randomized placebo-controlled trial.

METHODS: Patients referred to our regional multidisciplinary pain management center who fulfilled the International Association for the Study of Pain criteria for CRPS Type I were enrolled in the study over a 2-year period. Patients were administered, intravenously, either pamidronate, 60 mg as a single dose, or normal saline. Patients' pain scores, global assessment of disease severity scores, and functional assessment (SF-36) scores were documented at baseline and at 1 and 3 months.

RESULTS: Twenty-seven patients (18 female, 9 male; average age 45 years) were recruited, of whom 14 received pamidronate and 13 received placebo. Overall improvements in pain score, patient's global assessment of disease severity score, and physical function (SF-36) score were noted in the pamidronate group at 3 months, and improvements in role physical (SF-36) score were noted at 1 and 3 months. There was variability in pamidronate response among individuals.

CONCLUSIONS: Pamidronate may be a useful treatment option in the management of patients with CRPS Type I. Although treatment response was variable, the majority of patients improved. Early administration in tandem with other treatment measures is recommended.

Publication Types: Clinical Trial Randomized Controlled Trial

PMID: 15367305 [PubMed - indexed for MEDLINE]

Paula Abdul's use of Enbrel

A quick alert to clarify a misunderstanding regarding the use of Enbrel by Ms. Abdul her for CRPS/RSD.

Paula Abdul Takes Enbrel for Arthritis, Not for RSD

RSDSA received the following memo from Daniel J. Wallace, MD, FACP, FACP, Paula Abdul's Physician.

"Thank you for your note, but I must clear up one misunderstanding which was published and perhaps you can help our office.

First, Paula has been treated with Pamidronate for her RSDS.

Second, she is on Enbrel for an inflammatory arthritis, which is unrelated to her RSDS.

The patient has waived HIPAA rules and allowed me to explain this to you."

Paula Abdul's Story

RSDSA sent out the following press release via PR Newswire at 4 PM today to general newspapers, magazines, cable, radio stations, etc. (about 2,000 outlets).

For Immediate Release
Contact: Jim Broatch, MSW
Executive Director, Reflex Sympathetic Dystrophy Syndrome Association
Toll-free: (877) 662-7737
(203) 623-4415 (cell)

Reflex Sympathetic Dystrophy Syndrome May Affect More Than 1.2 Million
Early diagnosis and appropriate treatment key to any possibility of recovery

Milford, CT.
Paula Abdul's story about her struggle with Reflex Sympathetic Dystrophy Syndrome (RSD), also known as Complex Regional Pain Syndrome (CRPS) highlights this complex and poorly understood disorder. CRPS/RSD is a neurological syndrome characterized by severe and relentless pain that, according to the McGill Pain Index, is greater than that experienced by cancer patients. A common complication after surgery or minor injury, CRPS/RSD is a major cause of disability - only one in five patients is able fully to resume prior activities. The continuing tragedy is that many physicians are not familiar with its telltale symptoms and do not consider the diagnosis in their examination. Experience has shown that early diagnosis promotes more successful outcomes for people with the syndrome

RSDSA is a national not-for-profit organization, headquartered in Milford, Connecticut, that promotes greater public and professional awareness of CRPS /RSD and educates those afflicted with the syndrome, their families, friends, insurance and healthcare providers on the disabling pain it causes.

For more information, please visit http://www.rsds.org/

For interviews with physicians, researchers, or patient, please call toll-free (877)662-7737.

A cure for Paula Abdul's RSD?

This related story that was on TV in the southern NJ/Philadelphia area, NBC10.com
Abdul's Illness Brings Attention To Little-Known Disorder

Reflex Sympathetic Dystrophy Can Be Treated

Singer Paula Abdul went public this week with her private battle with a debilitating pain disorder -- the same disorder that struck a former NBC 10 reporter.

Abdul said she has been in excruciating pain for 25 years and it wasn't until a few months ago that she was finally diagnosed with reflex sympathetic dystrophy.

Once she was diagnosed, she was one of the lucky ones. Doctors found something to make her pain almost go away completely.

The American Idol judge was in a cheerleading accident 25 years ago and injured a disc in her neck. Since then, she has undergone 12 operations and has been on many prescription painkillers trying to get rid of her excruciating pain. It wasn't until last fall that she was finally diagnosed with RSD.

"For instance, brushing a hand with a feather might cause significant pain in these patients," said Dr. Michael Goldberg, of Cooper University Hospital. Abdul found out that people thought she was acting weird because she was on drugs, so she decided to go public and told her story to People magazine.

"She was treated for inflammation and the result was almost overnight miraculous," Goldberg said.

Abdul gives herself weekly intramuscular injections of anti-inflammatory medicine. Other people with RSD need spinal cord stimulators or morphine pumps.

Former NBC 10 reporter Angela Delvecchio went to Cooper University Hospital for experimental ketamine infusions to treat her RSD. Ketamine is known as a street drug called Special K. However, ketamine is meant to be an anesthetic.

"We also know that ketamine blocks the NMDA receptor, which is responsible for their pain or responsible for many elements to this pain," Goldberg said. "By blocking the receptor, we stop the transmission of the pain and stop this circle, this circuit, in these patients. We would say 70 percent of our patients are pain-free at six months after the infusion or greatly pain-reduced."

The problem is that the infusions don't last and have to be repeated.

Related Resources:
RSDS.org

Can this be Paula Abdul's miracle Drug?

Treatment of reflex sympathetic dystrophy with pamidronate (Aredia®), 29 cases.

Kubalek I, Fain O, Paries J, Kettaneh A, Thomas M.
Service de Medecine Interne, Hopital Jean Verdier, Assistance Publique-Hopitaux de Paris, Universite Paris Nord, UPRES Recherche Clinique et Therapeutique, Avenue du 14 Juillet, 93140 Bondy, France.

OBJECTIVE: To evaluate the efficacy of treatment with pamidronate in reflex sympathetic dystrophy (RSD) refractory to previous treatment.

METHODS: We studied the response (disappearance of pain and functional improvement) to pamidronate (60 mg/day for 3 days) in 29 patients with RSD refractory to previous treatment for at least 14 days.

RESULTS: On day 45, complete pain disappearance was observed in 86.2% of patients and functional improvement in 70%. The mean delay until the pain disappeared was 20+/-14 days and the delay until functional improvement was observed was 29+/-18 days. The mean delay of functional improvement was shorter in patients with post-traumatic RSD. Multivariate analysis did not reveal any factor predictive of response to treatment. Six (20.7%) patients suffered from side-effects (fever, diarrhoea).

CONCLUSION: Pamidronate (Aredia®) appeared to be effective in the treatment of refractory RSD; however, these results need to be confirmed by a controlled placebo study.

26.4.05

Reaction to misinformation by Paula Abdul

RSDSA's Response to Paula Abdul's Stories in the Media

We have received hundreds of emails and phone calls following Paula Abdul's announcement in that she had RSD as reported in People, USA Today, Inside Edition, Entertainment Weekly, and in an Associated Press news story that appeared in several newspapers.We are thrilled that the syndrome was mentioned in media that reached millions of people. It is a huge step forward in getting some recognition for a condition that affects so many of you. However, Paula minimized her experience with CRPS/RSD and offered the media an example of a miracle cure, which was reported to be Enbrel®. We would like to clarify some things for you.The story was about Paula Abdul, not CRPS/RSD. In some headlines, such as that in USA Today, Abdul says odd behavior not drug-related, gives a clear indication of the story's intent—to explain her behavior but not necessarily to educate people about RSD/CRPS.

The story did a poor job of educating the public on CRPS/RSD. All of us would have liked to see a better representation of the devastation that the pain brings. Paula's statement that she was even dancing again was devastating for many of you who have RSD. In addition, we have had several comments about Dr. Norm Harden's quotes in the story. First, he estimates 500,000 to 700,000 people in the United States have CRPS/RSD. Although we suspect that CRPS may affect more than a million individuals in the United States, there is no verifiable epidemiological data of CRPS/RSD's incidence and prevalence; the federal government actually classifies CRPS/RSD as a rare disorder with an incidence of less than 200,000. Second, he said that people do get on in their lives, and that patients often undergo physical and psychological therapy. Dr. Harden spoke with the writer at length about the diagnosis and treatment of people with CRPS/RSD. We believe the statement about psychological therapy is in relation to the multi-disciplinary treatment approach that Dr. Harden champions, not an "off the cuff" remark to minimize what people with CRPS/RSD experience. Remember, the quotes were selected by the writer to emphasize her story line.

Paula incorrectly described her treatment and this is being corrected in the media. Paula's statement that she was taking Enbrel, which miraculously cured her, had everyone scratching their head. Was this indeed a new miracle treatment? Jim Broatch, RSDSA executive director, contacted medical directors at both Wyeth and Amgen (who manufacture Enbrel) to see if there were any clinical trials on using the drug for RSD. They were equally surprised by the announcement. Jim then contacted Dr. Daniel Wallace, Ms. Abdul's physician, who sent us a memo stating she was taking Enbrel for an arthritis inflammation and pamidronate (Aredia®) for her CRPS/RSD.We have sent letters to the editors of People and USA Today, asking that they print a clarification. In addition, we are getting information on pamidronate (Aredia®) used to treat CRPS/RSD. We are also in contact with the manufacturer of Aredia to see if there are any new studies pending.This is not our story but you can benefit from it. Anyone who has CRPS/RSD or works with people who do would have written a different story. However, the media exposure has been excellent—visits to our website have increased by more than 700% and people are calling and emailing our office for information. We sent a press release with the tell tale signs of CRPS/RSD to more than 2,000 media outlests nationally. The fact is that people are talking about CRPS/RSD and that is great news!

We have asked Paula Abdul to work as our spokesperson to help raise awareness and funds for research.

What can you do? Write or send an email to the editors of People and USA Today to thank them for their coverage and offer to tell your story. Let's keep the ball rolling. You can also join RSDSA and help raise awareness in the general public and the medical community! Or donate to support our research and awareness efforts.

Contacts:EditorPeople Magazine
Time and Life BuildingRockefeller Center
New York, NY
10020
Fax 212 522 0794
Email: editor@people.com
USA Today
Send an email with your comments to: http://asp.usatoday.com/marketing/feedback/feedback-online.aspx?type=18

21.4.05

We regret to inform you...

Dear RSD Supporters:
We regret to inform you that the RSD Awareness Bill will not advance anywhere in the Oregon Legislature this year.

The Legislators feel that it basically repeats the role of the Pain Management Commission (PMC) , which was created in 2001.Below are the important sections of SB 885, which describes the role of the PMC.

You can view the complete legislation at: http://www.leg.state.or.us/01reg/measures/sb0800.dir/sb0885.en.html

You can view the website for the PMC at: http://www.oregonpain.org/ Besides promoting education and awareness on pain conditions, the PMC works some with the BME (Board of Medical Examiners) (the licensing board for MDs & DOs) regarding physicians' efforts to give proper doses of pain medications for pain patients.

When I presented the RSD Awareness legislation to the PMC in March, the Commission members voiced support of RSD awareness. The PMC has just finished the task of creating a one-hour video that most all healthcare practitioners in Oregon must view, so they will now have more time to tend to other tasks of the Commission.

I and others will encourage the PMC to give more attention to individual pain diseases, beginning with RSD. We will suggest that the PMC to highlight one pain disease every 2 months, at their bi-monthly meetings.

They could invite representatives from the national and/or state organization/s to speak at the PMC meeting and educate the PMC members about the disease, difficulties, needs, etc. National reps could be brought in by speaker phone. The PMC could then create a page on their website to educate practitioners about that pain condition. I have been talking with one of the PMC members and she wants to actively work on this idea. Feel free to email me, however I will be gone from April 19 until mid-May. On my return I will keep you posted on the progress we make on RSD Awareness in Oregon, and how you could participate.

Sincerely,Natalie Arndt

Senate Bill 885
71st OREGON LEGISLATIVE ASSEMBLY--2001 Regular Session Sponsored by Senator DUKES; Senators BURDICK, CASTILLO
Summary: Relating to pain management; creating new provisions; amending ORS 675.110, 677.228, 677.510, 678.101, 684.092 and 685.102; and appropriating money.

Be It Enacted by the People of the State of Oregon:
SECTION 1. { + (1) The Pain Management Commission is established within the Department of Human Services. The commission shall:
(a) Develop a pain management practice program for providers;
(b) Develop pain management recommendations;
(c) Develop ways to improve pain management services through research, policy analysis and model projects; and
(d) Represent the concerns of patients in Oregon on issues of pain management to the Governor and the Legislative Assembly.
(2) The pain management coordinator of the Department of Human Services shall serve as staff to the commission. + }
SECTION 2. { + (1) The Pain Management Commission shall consist of 19 members as follows.... SECTION 3. { + The Pain Management Commission shall:
(1) Develop a pain management education program curriculum and update it biennially;
(2) Provide health professional regulatory boards and other health boards, committees or task forces with the curriculum; and
(3) Work with health professional regulatory boards and other health boards, committees or task forces to develop approved pain management education programs as required. + }

6.4.05

RSD ***ACTION ALERT***

Dear RSD Community,
THANK YOU for your LOUD VOICES of support from all across the nation for the California RSD Education bill. They heard you in Sacramento!!!

However, it has been brought to our attention that the Assembly Health committee, who will be considering the bill at a hearing on April 12th, has decided not to count any e-mailed letters of support-- as they do not have signatures. Frankly, this committee is working overtime to kill this bill-- BUT WE WON'T LET THEM!

So PLEASE, using the information contained in the link below, snailmail or fax a signed letter of support for AB 1648 before April 12th. If possible, please send a letter to each Health Committee member. If that's too time consuming or expensive, please send/fax a signed letter to our legislative liaison, Tamara Odisho, in Assemblymember Fran Pavley's office (her contact information is below.)

Link to Health Committee information:
http://www.forgrace.org/trailblazer/march05.html

Contact info for Ms. Odisho:
Ms. Tamara Odisho
Legislative Aide
Office of Assemblymember Fran Pavley
Forty-first Assembly District
State Capitol
P.O. Box 942849
Sacramento, CA 94249-0041
916.319.2141 fax

PLEASE ACT NOW to send a clear message to Sacramento that the RSD community WILL BE HEARD!

Thank you ALL!

John GarrettPresident,
For Grace: www.forgrace.org
For Grace (http://www.forgrace.org)

An organization dedicated to raising awareness of
Reflex Sympathetic Dystrophy

PO Box 1724
Studio City, California
91614
818.760.7635