STANFORD, Calif., May 22 /PRNewswire/ — The words ‘chronic pain’ shouldn’t be part of any child’s vocabulary. But twelve-year-old Elana Hunter knows all about it. In 2005, this formerly active Bay Area girl noticed an inexplicable tenderness in her left wrist. The pain rapidly escalated during the next few days, making tiny arm movements excruciating and even causing the surrounding skin to turn grey and peel.
Elana is an example of the 10 to 20 children each year who are treated at Lucile Packard Children’s Hospital at Stanford for chronic regional pain syndrome, or CRPS — a mystifying condition in which the brain registers severe, unrelenting pain in an affected limb without any obvious physiological cause. CRPS is difficult to diagnose and even harder to treat — particularly in children. Weeks of intensive therapy at Packard Children’s, coupled with strong family support, helped to resolve Elana’s wrist pain and allowed her to take up the trumpet. Not everyone is as fortunate.
“It’s very frustrating,” said Packard Children’s anesthesiologist Elliot Krane, MD, who directs the hospital’s pediatric pain management clinic and is a professor at the Stanford University School of Medicine. “It’s horrible for a child to have chronic pain, but we can’t always help them as much as we’d like. Some kids do extremely well with treatment, but some remain resistant to our best medications and therapies.”
That should change soon. On May 30 and 31, Krane and Packard Children’s will host the first-ever conference to allow pediatric CRPS experts from across the nation to share ideas and talk shop. “We need to get everyone together in one room and discover our common ground,” said Krane. “We can find out what works and what doesn’t; what we know and what we need to know.”
The disorder often starts with a seemingly trivial injury that appears to heal normally but is followed by severe, persistent burning pain in the affected limb that can last for years. Although it’s not known what causes CRPS, physicians agree that it’s likely the result of abnormal nerve impulses in the brain that are interpreted as pain in the now-normal limb. Knowing what to do about it is another matter.
“It’s like we’re reinventing the wheel every time we see a new patient,” said Krane of the many different, multidisciplinary approaches to treatment. “And every practitioner has his or her own idea of what works and what doesn’t work.”
During the conference, anesthesiologists, psychologists, rheumatologists, adolescent medicine specialists, and neurologists from Children’s Hospital Boston; Harvard Medical School; Johns Hopkins University; University of California, San Francisco; Chicago Memorial Children’s Hospital; University of California, Los Angeles; Seattle Children’s Hospital; Duke University; Children’s Hospital of Philadelphia; and other institutions will join forces to discuss how best to evaluate and treat children with CRPS. The aim is to generate a consensus statement to guide treatment of kids around the country and to marshal their forces to conduct multi-center clinical trials to test new therapies. Pooling resources in such a manner will allow the researchers to conduct studies with much greater statistical power than if patients from only one institution were included.
Although it may seem to outsiders like just another conference, the outcome is tremendously important to children like Elana, who recently struggled with and overcame another CPRS episode, this time in her foot. But she’s not letting it get her down. While she and her family wait for a permanent cure, she remains active in school, playing in the band and participating in track and soccer.
The conference is supported by Barbara and Phil Endliss, the Mayday Fund, and the Kimball Endowment for Pediatric Pain Management at Lucile Packard Children’s Hospital.
Note to media: The Juvenile/Adolescent Chronic Regional Pain Syndrome Consensus Conference will take place on the Stanford University campus on May 30 and 31. Reporters interested in attending the conference to meet the experts and learn more about the condition should contact Packard Children’s Media Relations Manager Robert Dicks at 650-497-8364 or email firstname.lastname@example.org.
About Lucile Packard Children’s Hospital
Ranked as one of the best pediatric hospitals in the nation by U.S.News & World Report and Child magazine, Lucile Packard Children’s Hospital at Stanford is a 264-bed hospital devoted to the care of children and expectant mothers. Providing pediatric and obstetric medical and surgical services and associated with the Stanford University School of Medicine, Packard Children’s offers patients locally, regionally and nationally the full range of health care programs and services — from preventive and routine care to the diagnosis and treatment of serious illness and injury. For more information, visit http://www.lpch.org/.
Local woman suffers from years of pain
Published: May 07, 2007 10:34 am
ADA — Coni Turner certainly wasn’t pleased when doctors told her she had a rare disease called RSDS. But — at least — she was relieved to know that her intense, excruciating pain was not “imaginary.”
It has been 15 years since the 47-year-old Ada woman had her first episode with reflex sympathetic dystrophy syndrome, a debilitating chronic pain disorder involving the sympathetic nervous system. It typically results from an injury or trauma, which sets off the body’s mechanism for pain recognition.
In RSDS, the normal system of pain perception begins to misfire and an abnormal cycle of pain begins. As the disorder progresses, the abnormal pain of the sympathetic nervous system affects other areas of the body and can result in total disability as muscles, bones, skin and the autonomic immune system become involved.
The pain that Turner and other RSDS sufferers face is often “out of proportion to the severity of the injury,” according to officials with the Reflex Sympathetic Dystrophy Syndrome Association.
While a diagnosis of RSDS is difficult, the RSDS Association estimates that between 1.5 million and 6 million people suffer from the disease.
“When I was 32 years old, a coffee cup fell off the table and hit my knee,” Coni said. “It swelled up and kept swelling. Then I twisted the same knee. I began having intense pain. And it was two years before my doctor determined that I had RSDS.”
In 1983 Coni was a very active 22-year-old — the second woman to operate a forklift at General Tire, which was located in the Flex-N-Gate facilities then. There, she met her future husband Ricky, a Tupelo native. After a courtship, the two married and their future looked bright.
But Coni’s illness has snuffed out many of their hopes and dreams.
During that period, she has been hospitalized more than 20 times. Today, her world has shrunk to one room in their Ada home — a room without a bathroom. After having her left leg amputated at the knee, Coni’s traveling is limited to a wheelchair.
“I can’t get into the bathroom because the door is not wide enough to get my wheelchair through,” she said. “I’m almost like a prisoner in my own house. But we can’t afford to remodel.”
While Coni is on disability and has Medicare, there’s never enough cash in the household to keep up with the bills. Ricky, who has worked at Flex-N-Gate and its predecessors — Camrose, JP Emco and General Tire — for almost a quarter of a century, makes a decent wage — just enough to disqualify the family for some assistance to make their home handicapped-accessible.
Farmers State Bank in Allen has opened a special fund to help the Turners out. You can contribute at the bank or mail to The Coni Turner Special Account, Farmers State Bank, Attn: Glenda Howard, P.O. Box 467, Allen, OK 74825.
Coni said her husband has been a rock of support over the years.
“Ricky has been the perfect husband,” she said. “He has stood by every step of the way and worked a full-time job. My mother has also helped, staying with me when he’s at work. I wish every woman had a husband like mine.”
Ricky said officials at his workplace have been very supportive.
“I really have some outstanding supervisors at Flex-N-Gate,” he said. “They understand what we are going through and they’ve given me time off when we’ve needed it. That has really meant a lot.”
The Turners said they were very appreciative of the assistance provided by Southwest Church of Christ in Ada.
“They put a new roof on our house,” Coni said. “That really meant a lot to us.”
Meanwhile, Coni, who grew up in Allen, continues to live with her disorder one day at a time.
“It was very frustrating in the beginning when doctors and friends thought my severe pain was in my mind,” she said. “RSDS is a very serious disorder, one that I wouldn’t wish on anyone. I’m just very fortunate to have my husband and mother to look after me. I don’t know what I’d do without them.”
Debbie Fair loves dogs. She owns three of her own, but every once in a while, bad memories of a fateful day three years ago this month overtake her emotions, and for good reason.
In April of 2004 her Jack Russell terrier, Chewy, was attacked by a full-grown blond Labrador, and she found herself caught in the middle.
“He was on a short leash. I grabbed my dog and got caught up with this dogfight. I fell backwards and heard a loud pop. My calf muscles had ripped off my bones,” said Fair, who was 44 at the time and living in Vacaville.
Doctors refused to believe her injury was serious enough to require X-rays.
By the time she pursued a second opinion, she had contracted a neurological disorder called Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome. Caused by unhealed broken bones, RSD is now part of Fair’s everyday life. Her physical abilities are limited, and she’s on a regimen of 15 pills a day to control pain and seizures.
“I always tell people that if you don’t use a leash for your dog, you could change someone’s life forever,” said Fair.
Since moving to Discovery Bay last year with her husband Rex and three dogs – Chewy, Peanut and Butter – memories of her active life working in sales and marketing for Gold’s Gym in Vacaville are a blur.
“I can’t work full-time for anybody now,” said Fair, adding that what helps her heal is working from home and enjoying the scenery in her back yard. She also sells Isagenix, a body-cleansing and weight-loss product she marketed at Gold’s Gym before she contracted RSD.
According to Fair, RSD is considered a neurological disorder so severe that Social Security recognizes it as a disability. “I have a disease that physicians say there’s no cure,” said Fair. “But I don’t believe it. I can’t believe it or I won’t have hope. With this product, I’m getting better and better and my quality of living is a great start.”
When it comes to doctors and their diagnosis, Fair encourages everyone to trust their bodies. “I know my body. I was always a health nut,” she said. “I told my doctors to please listen to me.”
Fair is currently working on an RSD educational awareness bill vetoed last October by Governor Arnold Schwarzenegger. She’s hoping the bill will pass the next time around.
“This has affected my whole family,” said Fair, mother of three grown children and grandmother to a 4-month-old baby. “It’s been very hard. My daughter was upset about me taking medications, and I have memory loss, too.”
Pausing to regain her composure, Fair said that her family’s frustration with her memory loss at times adds to her physical pains.
“The medication affects your memory and moods,” she said. “I lost my job, income. My husband had to take on all of my duties. I used to be a super-mom.”
If she could wave a magic wand, all dogs would be on leashes, especially in Discovery Bay. Although she receives compensation from the owners of the dog who attacked her, it doesn’t reverse the consequences of the incident.
“I want people to know that they are responsible for the actions of their dogs,” she said. “They could be changing someone’s life forever.”
To comment on this story, visit www.discoverybaypress.com.
MANSFIELD — Eight young people will be honored Wednesday for displaying grace and courage in the face of handicaps, problems or personal tragedy.
As recipients of Mansfield Rotary Club’s 40th annual McGowan Courage Awards, each will receive an education fund award of $750 and other gifts during a luncheon at the Mid-Ohio Conference Center. Richland Bank will give each a $100 savings account.
Kelly has Spinal Cerebella Ataxia Type 2, a hereditary disease that causes changes in the brain and spinal cord resulting in an uncoordinated walk, poor eye-hand coordination and abnormal speech. She refuses special help getting around at school and does so without complaining while maintaining a respectable grade-point average.
In 2003 Eckert was at track practice when she was injured and later diagnosed with Reflex Sympathetic Dystrophy Syndrome. She suffers from a constant, severe headache. Eckert travels to Michigan every few months to see a specialist at the Michigan Head Pain & Neurological Institute, where she has injections into her spine and neck. She has missed almost a year of school, but still is involved in many school and church activities.
Harrod has overcome family problems, including her mother’s battle with cancer. She had to leave her mother and school in another state to make a new home with her grandparents in Lucas, where she has turned her life around. She has become active in her school and church, where she excels in music, and maintains a B average while working part-time at a music store.
Shank lost her father when she was in the second grade. She then moved to the Philippines, her mother’s native country, where she attended third grade and part of the fourth grade. She moved back to the United States in the fourth grade to live with her aunt, then back to the Philippines to be with her mother, who died of cancer when Shank was 13. After her mother’s death, she moved to Lexington to live with cousins. Shank speaks four languages and does well in school.
In 2005, Futty was diagnosed with Stargardt’s Disease, a common form of Juvenile Macular Degeneration, which caused her vision to deteriorate to the point that she is considered legally blind. She also suffers from Basilar Migraine headaches,which can cause strokes later in life and make walking difficult. She has endured her ordeal with poise and maturity and has not allowed her afflictions to interfere with school or other activities.
In her sophomore year, Laux began to lose her hearing, sight and balance. In order to continue at school, she learned sign language. She continues to take part in school activities and has prompted many others in her school to learn to sign while being an inspiration to students and staff.
In his junior year, Knowlton was diagnosed with Aspergers’ Disorder and Obsessive-Compulsive Disorder. With his family, he has learned responsibility and how to deal with life’s challenges as he has helped his mother in her struggle against cancer. He has earned the respect of teachers, counselors and friends who have helped him through his difficulties. As a result, he has been able to remain active in the school and community while maintaining an excellent grade-point average and school attendance record.
Baldridge has had several surgeries to correct leg and foot problems caused by cerebral palsy, which have created other difficulties. In spite of all that he has become a valuable member of the school’s basketball team as a manager. With strong character, he has overcome his disability and earned the respect of teachers from elementary through high school who describe him as conscientious, organized, polite and respectful.
Posted on Saturday, May 5, 2007
When Pastor Mark Kelley learned DeAnne Del Pup, a member of his discipleship class at the Bella Vista Assembly of God, needed some help to address a severe health problem, he suggested a pie auction.
“ Auctioneer Jamey Cope did a great job. I never dreamed we would raise over $ 4, 000 and $ 400 for one pie. That’s incredible, ” Kelley said of the recent event.
Although the celebrated $ 400 pastry was a pecan pie baked by Tami Kelley, the judges’ first-place award went to a lemon meringue pie from Joyce Senn.
At age 3, Del Pulp developed psoriasis, a skin disorder that causes skin to grow eight times faster than normal in certain areas of the body. In her teens, Del Pup acquired psoriatic arthritis, an offshoot of psoriasis. Her life was further complicated when, because of an accident, she developed reflex sympathetic dystrophy syndrome, which at the time was untreatable. Del Pup spent the next 10 years confined to a wheel chair.
Those interested in assisting Del Pup may call the church at 855-2222.
HARRISON – The house, the last one on a secluded road through the woods, is unmarked save for a sign on a tree reading “Orsini.” Its occupants, though, are reaching out to millions of people around the world as they lead the fight against a painful nerve disease.
American RSDHope operates out of a basement office. It consists of four people: Lynne Orsini, the executive director; her son, Keith Orsini; her daughter, Karen Toner; and her son-in-law, Jim Toner.
Beyond the small office, the organization reaches out to the millions who suffer from reflex sympathetic dystrophy syndrome. The disease is also known as chronic regional pain syndrome.
The disease’s symptoms include an intense burning pain, inflammation of the skin, spasms, short-term memory loss and insomnia. It is often accompanied by allodynia, a condition where a person’s sensitivity to touch is heightened, sometimes to the point where wind blowing across the skin is extremely painful.
“The pain level of this disease is horrible,” Karen said. “It changes your life.”
According to a chart provided by American RSDHope, the disease is the most painful form of chronic pain when compared to other conditions on the McGill Pain Index.
The organization started its work in 1995 after Lynne discovered that her son was suffering from the disease.
“We couldn’t find any information on it,” she said.
Keith’s illness was originally misdiagnosed, which Lynne said is a common occurrence. After fracturing his spine in a car accident, the RSDS began to affect his entire body.
After Keith’s illness, Lynne began communicating with other people suffering from the disease and the organization was born.
“Little by little, it kept growing,” Lynne said.
Today, American RSDHope has helped start support groups across the nation and has contact with groups in England, Australia, Canada and South Africa. It provides information to those suffering from its disease through information packets and its Web site, http://www.rsdhope.org/
Lynne said the organization raises money by selling awareness items such as T-shirts and bumper stickers. Donations go straight to research, and RSDHope recently announced a $50,000 research grant will be given to Dr. Richard Boles of the Children’s Hospital in Los Angeles.
Lynne said the organization began looking for a matching donation after raising $25,000. They received one from the Reflex Sympathetic Dystrophy Syndrome Association, another RSD awareness organization based in Connecticut. The association also alerted them to Dr. Boles’ work.
Boles and fellow researchers will analyze the mitochondria DNA samples from 300 individuals who have been diagnosed with RSDS.
The goal of the study is to identify whether energy deficiency plays a role in the cause of RSD, which Boles hopes will lead to more successes in the treatment of the disease.
“We’re pretty excited about it,” Lynne said. “I think it holds a lot of promise. But I know we’ve got a long way to go.”
RSD is divided into Type I and Type II classifications. Type I can result from simple trauma, such as a sprain, or more complex injuries, such as fractures and heart problems. In these cases, a nerve injury cannot be identified right away. Type II, also known as causalgia, is a definable major nerve injury, due to noticeable damage to the nerves.
There is no cure for the disease, although treatments are available. These include the use of nerve blocks and intrathecal pump implants that deliver medication directly to the spine. Ketamine treatments show the most promise, though they are usually not covered by insurance.
Lynne said most RSDS sufferers are disabled due to the intense pain or the medications they must take.
In rare cases, RSDS can be fatal, although Lynne said it is unclear whether this is from the medication, pain or other causes. She cites suicide as the most prevalent cause of death among sufferers of the disease.
American RSDHope’s activities include a mentor program where a person who has had the disease for two to three years can help someone else who has been diagnosed with the disease.
“There’s a lot of angels out there,” Lynne said.
While she handles many of the organization’s activities, the other family members all have a role. Keith maintains the group’s Web site, Karen handles the e-mail, and Jim helps with a variety of tasks, including heavy lifting.
Lynne’s husband, Bob Orsini, died two years ago, but had played an active part in the activities.
“He put his heart and soul into this,” Karen said.
“And his retirement fund,” Lynne added.