September 5, 2019

Clarity, Purpose & Community: RSDSA Unites Hundreds to Combat CRPS

It’s not easy for others to see what it’s like to live with extreme, chronic pain. That’s why the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) will host its 4th Annual Walk for Complex Regional Pain Syndrome on Saturday, September 7, 2019. The event is from 8 a.m. to 2 p.m. at Eisenhower Park in East Meadow, NY. The walk will  unite individuals living with CRPS, as well as their supporters, community advocates and health professionals, to raise awareness, fund treatment options and provide a wealth of educational resources.

Although under-diagnosed and under-reported, CRPS (nicknamed the ‘Suicide Disease’) is horrifyingly real. The disorder is a neuro-inflammatory disorder that occurs when the nervous and immune systems malfunction as a response to tissue damage from trauma. There is no cure for CRPS. Available treatments are limited and often ineffective.

“It’s not about the physicality of the walk because some people can’t do it,” said Elizabeth Seickel, RN and co-chair of the RSDSA Walk.  “Just being there makes many attendees feel empowered, like they’re part of something that’s bigger than the condition.”

Clarity and purpose, according to Seickel, are two of the event’s most essential takeaways for people living with CRPS. Few medical professionals know how to diagnose or treat  the disorder. Consequently, many people go for years without knowing the real cause behind suffering from extreme burning, skin discoloration, muscle wasting, debilitating pain and weakness, internal medical complications and other problems.

Another positive element for attendees is community. CRPS is still largely considered a rare disease which makes those living with the disorder to feel especially isolated.

“Networking is key,” Seickel said. “Whether you’re newly diagnosed or have been living with CRPS for a long time or whether you’re an adult or parent of a child with CRPS, just to meet someone else you can relate to is encouraging and educational. Attendees share their experiences with each other and learn which questions to ask. You have to be the CEO of your own health.”

Admission to the 4th Annual Walk is $25 for adults (ages 12+), $10 for children ages 6-11 and free of charge for children under age 5. Registered participants can also expect food, entertainment, raffles and crafts activities. The event will be live streamed on Facebook, and some footage will be featured in an upcoming documentary filmed by a CRPS patient.

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