Bounty of Hope 2003 Highlights Pediatric CRPS

The 5th annual Bounty of Hope fundraising and awards dinner will highlight achievements in pediatric CRPS. Charles Berde, MD, PhD, Harvard Medical School and Director of the Pain Treatment Service at Boston Children's Hospital, will receive the Scientific Achievement award. Aya Ravek of Ottawa, Canada, diagnosed with CRPS at age 11 has created and maintained a website for children of all ages. She has been named this year's Hero of Hope. In addition, the Awareness in Media award will go to Newsweek editor Mark Whitaker in recognition of the magazine's special report on pain. The dinner will be held November 6, 2003, beginning with cocktails at 6 pm, at the Union League Club in New York. Tickets are $300, and there are a number of sponsorship opportunities available. For more information, call (203) 877-3790.

Although the incidence of CRPS in this patient population has not been determined, physicians, such as Dr. Berde, report that CRPS is being diagnosed more frequently in children and adolescents. He notes that girls are affected roughly 5 times as often as boys; the incidence increases markedly just before puberty; and female dancers, gymnasts, and competitive athletes comprise a high percentage of the patients.

Children with CRPS are particularly vulnerable. Because CRPS is not well understood by the medical community, young people's pain often is ignored, questioned, or even mocked. Aya Ravek says, "I used to wish that I had a broken leg or something so people could see I was hurt. One of the problems with CRPS is that it is an invisible disorder, so people don't believe you're in pain."

Many of the youths who have CRPS become depressed or develop anxiety disorders, post-traumatic stress disorders, distorted body image and eating disorders, and stressful family dynamics.

RSDSA has a number of initiatives to increase awareness of pediatric CRPS. In June, RSDSA exhibited for the first time at the National Association of School Nurses convention and received rave reviews for Helping Children/Youth with CRPS Succeed in School and the two-sided laminated telltale symptom card. In addition, RSDSA is sponsoring an art project to increase awareness of children in pain, Children up to 18 years of age are invited to submit artwork, poetry, or prose that indicates how they feel or look when the pain is severe.

July 23, 2003