What would it take to welcome something into your life that at first could only remind you of what you did not have?

RSD Diagnosis
Eric Westover, founder and CEO of UpperEx National Outreach Coalition (UNOC), knows what it takes to flourish in the face of adversity. Diagnosed in 2002 with Reflex Sympathetic Dystrophy (RSD) below his right elbow, the result of a 10-year-old work injury to his right arm, Westover knew he might require amputation.

As he paid out-of-pocket for treatments and experienced the continued rapid loss of function, he lost the lighting and theatrical design business he’d started. When he lost his home, he moved back to his parents’ house at the age of 32. Then Westover’s doctor told him further surgeries would do more damage than good and recommended a below-elbow amputation of his right arm.

Life as an Amputee
“I cried for about a week,” Westover says. “And then I thought I had a second chance for a life.” While his non-functional arm disrupted many of the activities that he loved, he believed that through amputation and activity-specific prosthetic use, he could again enjoy the activities that his condition had impaired.

As a person with a new upper-extremity amputation, Westover prowled the internet looking for resources to draw upon, and what little information was then available was not enough to help him. His friends urged him to create the resource he had been seeking. Luckily for the community of people with upper-extremity amputations, Westover listened to them and found a new direction for his life.

Amputee Resource
In October 2004 he began work on the online magazine UpperEx.com. With no previous experience in journalism or publishing, Westover worked hard and hoped for the best. He published the first issue in May 2005 to 20 subscribers. Today, the magazine has an international readership of more than 3,000.

As his advocacy and activism increased, so did his awareness of the continued absence of an upper-extremity amputation-focused foundation. He founded the non-profit UpperEx National Outreach Coalition (UNOC) in 2006. UNOC, the first foundation to focus solely on empowering individuals affected by upper-extremity limb loss, exists to provide programs, services, and resources for people with upper-extremity limb loss who are dealing with any challenges their new physicality may create.

Peer Support
One of the most important services UNOC offers is the Peer Support Network. The PSN facilitates meetings between people with new amputations and mentors who have undergone similar events in their own lives. Westover claims that these face-to-face encounters are irreplaceable as a means for people with new amputations to begin reassembling what can sometimes feel like disassembled lives.

In 2007, UNOC facilitated 325 visits through the Peer Support Network. In 2008, UNOC has continued to grow, recently announcing a partnership with the Amputation Coalition of America in order to extend its influence. The first fruit of the partnership was UNOC’s sponsorship of eight educational seminars at the ACA National Conference.

Disabled Veteran Resource
Responding to present-day demands, UNOC works with disabled veterans at Walter Reed Army Medical Center. “The current conflicts [the United States] is engaged in have brought attention to upper-extremity amputation,” Westover says. “Thirty-five percent of amputees coming back have upper-extremity limb loss.”

Westover hopes UNOC can develop a lasting partnership with Walter Reed that will help place discharged soldiers with amputations into upper-extremity amputation based peer groups when they return to their homes.

While UNOC can provide people with an outlet for emotions they cannot otherwise express, don’t confuse the organization with a support group.

“When people hear ‘support group’, they often have negative connotations,” Westover says. “The main mission of UNOC,” he adds, “is to empower people for themselves.”

For more information, visit UpperEx National Outreach Coalition at www.upperex.com.