Some days, 54-year-old Stacey Udell, of Melville, wakes up feeling like her entire body is on fire. She has grown accustomed to the burning sensation over the past eight years, she said, but what she didn’t know, until roughly a dozen doctor visits later, was that she was experiencing reflex sympathetic dystrophy syndrome, also known as complex regional pain syndrome, a chronic pain disorder with no cure.
The cause of the disease is a malfunction of the nervous and immune systems in response to tissue damage from physical trauma — in Udell’s case, leg surgery.
“Life, as I once knew it, was completely gone,” she said. The pain became so intense, she said, that she quit her public relations job, rarely left her house and grew too disabled to take on everyday tasks like doing the laundry.
“It was very, very difficult until I learned how to adapt and found a network of friends and support system,” Udell said. Although there is no cure for her condition, she has undergone physical therapy and ketamine and lidocaine infusions at Stony Brook University Hospital.
Now, she works for the nonprofit and advocacy group the Reflex Sympathetic Dystrophy Syndrome Association, which is planning its fourth awareness walk at Eisenhower Park on Sept. 7.
“It’s such a lonely disease, and people become isolated,” Udell said, explaining that some patients are confined to their beds because of the physical stress.
“So often, people have never met another person with this syndrome,” said Jim Broatch, the association’s executive director. “You could learn from other individuals about how they build their treatment teams and restore their functioning.”
The RSDSA, which is based in Milford, Conn., held its walk in Central Park for several years beginning in 1984, before expanding and moving to East Meadow in 2016. Educational resources, sponsors and health professionals will be on hand for the event, which will also feature entertainment, raffles and craft activities for children.
The walks have raised $150,000 for medical research, advocacy, financial assistance for patients and the establishment of the Brad Jenkins Scholarship Fund, named for an RSDS patient who was diagnosed with the disease after a motorcycle accident and died after an accidental overdose. The RSDSA also sends children to the Center for Courageous Kids, a camp in Kentucky for children with RSDS.
Last year’s event alone raised $65,000, and drew 500 participants from across the country, some coming from as far away as Florida and California. “We’re hoping this year will be even bigger and better,” Udell said.
In addition to the walk, there will also be a community festival and resource fair at which patients can speak with doctors, physical therapists and dentists about their experiences.
Because of the rarity of the syndrome, Broatch explained, many patients do not receive adequate treatment. There is no single medication that effectively treats the symptoms of the disease.
Patients are sometimes prescribed opioids, but the opioid epidemic has led to stricter access to opioid-based medication. There are many emerging alternatives to opioids, however, Udell explained, such as the ketamine and lidocaine infusions she receives, medical marijuana and technology created by a company called Medtronic, which involves implanting devices in the spinal cord to intercept pain signals before they reach the brain.
“We’re really educating people to advocate for themselves and to be more attentive of their bodies,” Udell said. She described the walk as a “day of hope” that unites people with the disease “so they could learn about their challenges and how to get past them.”
Early registration for the event is available until Sept. 1, for a fee of $25 for adults and $10 for children ages 6 to 11; it is free for children 5 and younger. Admission includes a complimentary bagel breakfast and barbecue lunch, during which patients and caregivers can meet and socialize. To find out more, to register or to inquire about sponsoring the walk, call (877) 662-7737 or go to https://bit.ly/2Lgi7h2.