September 4, 2018

Some Call It The ‘Suicide Disease’

Few things compare to constant electrical-like currents with burning hot and ice cold pain. That’s what Elizabeth Seickel, RN, likened Complex Regional Pain Syndrome (CRPS) to, in terms of pain level.

“It’s physical torture, “said Seickel, “If I didn’t have this condition, I honestly don’t know how I could wrap my head around its severity. It’s hard to articulate.”

Diagnosed nearly 12 years ago, Seickel is a knowledgeable spokesperson in the CRPS community. She volunteers with the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), an internationally recognized nonprofit organization dedicated to supporting people and caregivers diagnosed with this debilitating disorder.

RSDSA is based in Milford, Connecticut, and was established in 1984. The organization is hosting its 3rd annual Long Island fundraising walk on Saturday, Sept.15, from 8 a.m. to 2 p.m. at Eisenhower Park in East Meadow to help raise funds and awareness.

“It’s called a walk, but it’s really not about the physicality of walking,” Seickel said, “It’s more about the connection and standing up to CRPS together. It’s very cathartic to meet others who’ve been through similar experiences. It’s almost indescribable, like meeting someone who speaks a different language but happens to be on the same journey. Sometimes there are no words for it. People just cry—that’s so uplifting.”

Last year, RSDSA’s successful event attracted over 450 participants and 50 volunteers, raising nearly $56,000, which was double the amount raised at the organization’s first walk in 2016. The occasion is known for bringing together local CRPS sufferers in the New York, New Jersey, and Connecticut metro areas, as well as supporters from all over the country.

Nicknamed the “suicide disease,” CRPS is a neuroinflammatory condition that attacks the nervous and immune systems. There is no known cure and effective treatment is limited. Many people, including Seickel, would argue that the disease is not rare but under-diagnosed and under-reported.

“I think it’s more prevalent than one expects,” said Seickel. “But patients who are not strong advocates for themselves often get misdiagnosed or shut down. Our focus for this event is showing people they’re not alone and they’re not crazy. You don’t have to just accept what you’re getting—there’s a wealth of research and information here to help you.”

Admission to the event is $25 for adults (ages 12+), $10 for children ages 6-11 and free of charge for children under age 5. In addition to Eisenhower Park’s 1k and 2.5k paths, educational resources, sponsors, and health professionals will be available. Registered participants can also expect food, entertainment, crafts activities and raffles.

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