Intro Letter
It is estimated that between 1.5 and 6 million Americans suffer from the devastating chronic pain disease, Reflex Sympathetic Dystrophy. That’s more than those with breast cancer, HIV/AIDS and multiple sclerosis combined; yet to date RSD remains virtually unheard of. RSD is curable if caught and treated early; however, patients often have difficulty finding a timely and proper diagnosis. If left unchecked, those afflicted will endure a lifetime of burning pain, disability, financial ruin, social isolation and depression that often leads to the ultimate pain killer—suicide. For Grace is a nonprofit organization passionately devoted to raising public awareness of RSD in order to promote better quality-of-life outcomes for those impacted by this catastrophic disease. Our spokesperson, Cynthia Toussaint, has survived RSD for 25 years in order to tell her inspirational story for those who do not have a voice.
Fact Sheet
- It is estimated that between 1.5 and 6 million people have RSD in the United States; using the lowest statistic, that exceeds the combined total that have HIV/AIDS, breast cancer and Multiple Sclerosis.
- RSD is also known as Complex Regional Pain Syndrome (CRPS).
- RSD was first described over 125 years ago during the American Civil War; wounded soldiers would wrap their affected limbs in wet rags to “extinguish the fire.”
- RSD is a progressive, neurological disease that has constant, severe, burning pain as its main symptom.
- RSD is triggered by a trauma to the body, usually a surgery or injury.
- RSD can spread to any and all parts of the body from the initial site of injury.
- RSD occurs three times more often in women than men.
- RSD pain can be exacerbated by the slightest physical or emotional stimulation; sensory stimuli (e.g., bright lights, vibrations, a gentle breeze, etc.) often aggravate RSD pain.
- Many healthcare professionals mistakenly believe RSD is a psychological condition rather than a physical one; sufferers often develop severe psychological problems, secondary to their physical problems, if their pain complaints are not believed.
- RSD wreaks havoc on the lives of the patient, their loved ones and co-workers; associated problems include prolonged family disruption, patient disability, unemployment, misdiagnosis, improper treatments, multiple surgeries, diminished quality of life, increased healthcare costs, dependence on social programs and the inexperience of healthcare professionals in treating RSD.
- The suicide rate among RSD sufferers is extremely high due to the intensity of the never-ending pain, sleep deprivation, frustration, social isolation, misunderstanding, and lack of support from medical professionals, family, friends and coworkers.
Background
Articles & Other Media
Woman’s Day—March 2007
“My Mystery Disease” by Cynthia Toussaint (.pdf)
New York Times—May 2006
“Doctors Struggle to Treat Mysterious and Unbearable Pain” (.pdf)
(Picked up nationwide)
For Grace Reflex Sympathetic Dystrophy
PSA—February 2006
“Putting Out the Fire” (QuickTime video)
Discovery Health Channel’s Mystery Diagnosis—
October 2005 - Currently Airing
“Issac’s Nightmare” (QuickTime video)
(Picked-up by TLC/The Learning Channel)
The Orange County Register—March 2005
“SECOND CHANCE”
La Opinion—May 2004
“Aflicción crónica”
Los Angeles Times Op/Ed—January 2004
“With Chronic Pain, Discrimination Hurts,” by Cynthia Toussaint (MS Word)
The Orange County Register—June 2003
“Silenced Screams” (Picked up nationwide)
Eastern Group Publication— May 2002
“Proclamation Calls Attention to Little Known Disease”
KABC’s Denise Dador Profiles RSD May 2003
Testimonials
A Success Story
”In 1994, I had two surgeries to repair a broken bone in my right foot. Six weeks after the procedures, I was still in quite a lot of pain. My orthopedic surgeon said that was ‘normal.’ He hadn’t even recommended
physical therapy, and simply told me to take more muscle relaxants and painkillers. I knew in my gut that wasn’t right, and good thing I didn’t listen to him. I decided to consult experts at the top orthopedic group in the country.
Dr. Phillip Kwong knew exactly what my problem was: RSD. I’d never heard of it, but he referred me to Dr. Edward Carden, who I saw that same week. I asked Dr. Carden what would have happened had I not been treated, and I’ll never forget what he said: ‘Your leg would have shriveled up.’
That scared me to death. To me, not being able to walk WAS death. I remember that moment so vividly that I cry now at the memory of it. But when Dr. Carden said he could cure me, I believed him. Why wouldn’t I believe him? He’s the doctor. It never even occurred to me that I wouldn’t be cured.
But it wasn’t easy. At first I saw Dr. Carden three times a week for what’s called ‘pain blocks.’ He injected my foot with lidocaine, effectively numbing it to mask the pain. That was followed immediately by intense physical therapy. He would always ask me how long I was pain free. At first it was 15 or 30 minutes, and Dr. Carden seemed disappointed. I think he felt like he was failing me. But then the
pain-free interval increased to hours, and then, miraculously, days. He wasn’t failing me, and I
wasn’t going to fail him. I was going to be cured
for both of us.
It took a year. I knew I was cured when my physical therapist said, ’We need to kick you out because you’re in better shape than we are!‘ Because I was cured, I just assumed everyone could be, too. After all, don’t all doctors know about RSD? They’re doctors. They should.
And then I met Cynthia Toussaint. Her life was devastated by this misunderstood disease. Her
story makes me angry at all the doctors who believe RSD is ‘all in your head.’ I am proof that this is a
real — and curable — disease. But I am one of the lucky ones. Cynthia, and many like her, are not.
And it’s all because the doctors wouldn’t listen.”
—Linda Nunez
Resources
Physician Contact List
David Bresler, Ph.D.
The Bresler Center
Century City, CA
Associate Clinical Professor at UCLA
310.277.0300
Scott Fishman, M.D.
Chief, Division of Pain Management
Associate Professor at UC Davis
916.734.6824
Russell K. Portenoy, M.D.
Chairman, Department of
Pain Medicine and Palliative Care
Beth Israel Medical Center
New York, NY
212.844.8370
Steven Richeimer, M.D.
Director, USC Pain Management
323.442.6202
Robert J. Schwartzman, M.D.
Professor and Chairman of Neurology
MCP Hahnemann School of Medicine
Philadelphia, PA
215.762.6915
Michael Stanton-Hicks, M.D.
Pain Management Clinic
The Cleveland Clinic
Cleveland, OH
216.445.9559