East Meadow fundraising walk spotlights rare, debilitating chronic pain condition

Friends Debbie O’Neal, Beth Seickel and Stacey Udell share many things in common. Among them: motherhood, a passion for volunteerism and their experiences with debilitating pain.

On Saturday, the three women, all of whom are diagnosed with the chronic condition Complex Regional Pain Syndrome, hosted a walk at Eisenhower Park in East Meadow to raise funds and awareness about the rare disease.

The walk on a 1- or 2.5-kilometer path was the third annual fundraiser for the Reflex Sympathetic Dystrophy Syndrome Association, a Connecticut-based national patient advocacy organization for children and adults affected by the syndrome. More than 500 people, some from Maryland, Massachusetts and Rhode Island, participated. Many wore T-shirts designed by Udell’s daughter, Jillian, 23, that read “CRPS gets on my nerves.” Some used wheelchairs because of their condition.

“It’s not so much about the walk,” said Udell, 51, of Melville. “It’s about unity, hope and education more than anything.”

The daylong event also featured live music, children’s crafts, food and raffles for theater and Paul Simon concert tickets. As of the close of the event, more than $53,000 had been raised, Udell said.

The neurological syndrome usually develops in an injured limb and causes severe physical pain. Its cause isn’t clearly understood, but doctors say it affects about 5,000 Long Islanders and more than 250,000 others nationwide. There is no cure and few effective treatments.

To say those with Complex Regional Pain Syndrome often experience intense and burning pain, sensitivity, sweating and swelling is an extreme understatement. On the McGill Pain Index, which ranks levels of pain on a scale from zero to 50, the disease rates a score of 42, higher than amputation without anesthesia, non-terminal cancer, fibromyalgia or childbirth.

Exposure to a brisk breeze or the brush of a blanket on the skin of those with the disease can cause crippling pain. Udell said not a week goes by without at least one doctor’s visit for the disabling disorder. 

Treatment is most effective when started early and generally entails physical therapy, said Dr. Brian Durkin, medical director of the Pain Institute of Long Island. He was among the medical professionals at the walk offering information about treatment.

Organizers said Saturday was an opportunity for anyone with chronic pain to learn more about Complex Regional Pain Syndrome, get educated, find support and build relationships.

O’Neal, who lives in Brookhaven, Seickel, a Massapequa resident, and Udell met through their volunteer efforts with the Reflex Sympathetic Dystrophy Syndrome Association.

O’Neal, 59, worked for 27 years in marketing and event planning; Seickel, 56, spent 34 years as a registered nurse, and Udell devoted half her life to a career in public relations. Because of the syndrome, none is able to work.

The women believe their diagnosis and professional experience equipped them with the know-how to organize the walk, which they say helps many find validation.

Melissa Rhodes, 37, a Mastic resident who has a severe case of the disease, attended her third walk Saturday. 

December will mark 15 years that Rhodes has been affected by the disease, the result of a shoulder and neck injury in 2003. She has had more than 30 spinal surgeries since her diagnosis and is hoping for more advancement in treatment options.

“It’s an opportunity to be seen and to learn I’m not the only one,” Rhodes said. “It gives me hope to keep on going.”