BUFFALO, NY -- Two weeks ago, Channel 2 Reporter, Mary Friona brought us Maria's story, a very personal story about her daughter who was involved in a tragic accident and developed a condition called Reflex Sympathetic Dystrophy or RSD.
Since the story aired, we have been overwhelmed with responses. We have heard from hundreds of people. Many suffering the same condition. We thought it was important to do a follow-up to the story.
Mary met with a young lady named Amy Besecker and her parents. Amy was injured in a snowboarding accident in 2010 and was diagnosed with RSD just a few months later.
Since the accident, Amy has worked hard to fight off the RSD. RSD is a chronic progressive neurological condition that affects skin, muscles, joints, and bones. It causes various degrees of burning pain, excessive sweating, swelling and extreme sensitivity to touch. Experts don't know why some people develop RSD.
We heard from other people, too. Like Lynda who sprained her ankle in 2001. She's had to learn to deal with the swelling, and shooting and stabbing pains. She started a local support group in 2006.
Lillian was eleven when she was diagnosed. She didn't have any real injury, her foot just stated hurting one day. Her pain is severe and she has an appointment at the Pediatric Pain Rehabilitation Center in Boston next month.
Katie was officially diagnosed at Pittsburgh's Children's Hospital in 2007. Her RSD began after rolling her ankle. Sadly, insurance would not cover the treatment so the family had to do it on their own. She is still living with pain.
Kim developed RSD after ankle surgery in 2006. She remains on strong pain medications and walks with a cane.
Alyssa developed RSD after twisting her knee during a soccer game three years ago. She spent four weeks at the Pediatric Pain Center in Boston. She is now 19 and lives with chronic pain.
These are all stories that Dr. Lorianne Pereira, a Vascular Neurologist in Buffalo has heard over and over again. Dr. Pereira has had extensive training in RSD while working in Philadelphia. She says RSD is often undiagnosed or misdiagnosed. Some people have had limbs amputated. The worst part is, even after amputations, the patients still have all of that pain.
For those suffering with RSD, even a light breeze can be painful. Everyone we spoke with say they hope that this story brings awareness to the disorder. More research and education are needed. The medical community needs to know more and have the ability to diagnose RSD quicker.
As for Amy, she is doing well. She just graduated from high school this week and her mother, Sue was extremely proud to see her walk across the stage.
Dr. Periera cares for adult patients, but can also help children by referring them to another doctor or facility. She can be reached in her office, that number is (716) 667-2064.
For more information on RSD you can go to www.rsds.org
There is also a local support group that meets monthly at St. Paul's Lutheran Church on Main Street in Eggertsville. Call Linda at 337-3571 for more information.
There is also a walk to help raise awareness and money. The walk will be held at Delaware Park's Ring Road on Saturday, May 26, 2012 at 11:30am.