Science&Health: Rocking out to raise money for RSD research
One of the most painful experiences for Ashley Goodall is when a person walks by.
The 16-year-old high school student from Bakersfield was diagnosed with a condition called Reflex Sympathetic Dystrophy Syndrome (RSD) when she was 8, and faces constant pain from stimuli as small as the breeze created by a person walking past her.
RSD, also known as complex regional pain syndrome, is a condition in which the sensory system of one part of the body gets turned on, leading to increased sensitivity to pain out of proportion to its stimulus.
“The pain is very excruciating … it’s a stabbing, shooting, burning kind of pain,” said Lonnie Zeltzer, director
of the pediatric pain program at UCLA.
At one point, the pain was so bad for Goodall that she had to stop going to school because she could not be touched.
But instead of silently suffering from the condition, she decided to actively fight against RSD by forming a nonprofit organization with her mother called “Rock Out to Knock Out RSD”, to raise money for RSD research at UCLA through concerts.
The money raised by the organization will be used to provide the Pediatric Pain Program at UCLA Mattel Children’s Hospital with money for research for RSD as well as to purchase medical supplies and to teach others about the syndrome.
People suffering from RSD, often triggered by traumatic incidents such as accidents or invasive medical treatment, have a malfunctioning nervous system where neurons misfire, sending multiple pain signals to the brain.
RSD is usually limited to one part of the body, but can spread and cause temperature sensitivity and difficulty with certain types of movement.
Zeltzer added that about 200,000 to 1.2 million people, mostly women, are affected by RSD.
Before it was determined that she suffered from RSD, Goodall spent seven years visiting over 10 doctors, and in one misdiagnosis she almost had her arm amputated because a physician believed it was infected.
Once she was properly diagnosed, she underwent treatment, which for RSD patients can include medication, physical therapy and psychological support.
Though she had a very complete recovery, Zeltzer said she had a relapse, which is not uncommon.
Before her visit to Zeltzer in the pediatric pain program, where she was diagnosed, some people started to believe that she was making up her syndromes.
“It was hard to explain to people what I had. People thought I was making it up,” she said.
Goodall’s mother, Lori, said it was frustrating to witness her daughter’s difficulty in being properly diagnosed.
“It’s very difficult to see your child screaming in pain, and going through a ton of doctors to see what was wrong with her,” she said.
Though the idea started several years back, Goodall’s project became a reality last year, when $5000 were raised at the first concert event.
The second concert took place this past Saturday in San Luis Obispo where local bands Seed and Mystic Red performed.
Ashley’s mother said her daughter’s efforts are in the hope of helping families avoid repeating their difficulties in properly diagnosing RSD.
“I’m very proud of her,” Lori said.
“She does it not for the recognition, but so that other people won’t have to go through the same thing she did. So others won’t have to wait 7 years before finding out what is wrong.”
Goodall said she donated half of the proceeds and will use the rest to plan the next event.
She said she has received offers for help from as far as Canada and New Zealand.
Zeltzer said given Goodall’s difficulties, her efforts were selfless and commendable.
“Its unusual to have an adolescent still in high school take their condition and turn it into something positive,” she said.
“I think she’s a remarkable young woman who is dedicated, knows what she wants and goes after it. She exhibits tremendous strength and courage. Despite her own pain, she is still working to help others.”
