Kevin Riordan: Survivor of rare disease learns to treasure life

Eric Majusiak (right) can now cross catching a shark off his "bucket list," and he feels he's on the rebound.
Eric Majusiak (right) can now cross catching a shark off his "bucket list," and he feels he's on the rebound.
Posted: October 10, 2012

As a civilian with the Army Corps of Engineers, Eric Majusiak was ready to respond to emergencies nationwide.

In 2011, Majusiak, 28, was deployed to Joplin, Mo., after a killer tornado, and to Upstate New York in the wake of Hurricane Irene.

But nothing prepared the burly outdoorsman and civil engineer for what happened in February. He was stricken by hemophagocytic lymphohistiocysis (HLH), a rare autoimmune disorder, and it nearly killed him.

The South Harrison Township resident and his wife, Amanda, 25, are high school sweethearts but had been married for only a few months when he returned from a Salem County hunting trip with aching joints.

Within hours, Eric could barely move. He was hospitalized, first at Kennedy Health System in Washington Township, then at Temple University Hospital.

After three months of chemotherapy, steroids, antibiotics, and other treatments - including a recurring procedure resembling dialysis, but for his lungs - Eric was discharged in May.

He returned to work at the Corps office in Center City (but not to the emergency response team) in August. And while there's no cure for HLH, Eric believes he's got it on the run.

"You can't be self-pitying," he says, walking slowly, but without the cane he despises, in the rural Gloucester County home he shares with Amanda, a geographic information system specialist and fellow Rowan University grad.

These days, the couple spend much of their spare time raising awareness of histiocytic disorders like HLH, in which the body so overproduces white blood cells that organs are damaged and tumors form.

Amanda maintains a website, www.ericsjourney.org, that's packed with information and inspiration and includes Eric's heartfelt blog. Family, friends, and organizations, including clubs at Rowan, are pitching in as well. Recent events sponsored by student groups within the College of Engineering raised $800.

"We're doing this . . . to support our recent civil engineering graduate, as well as to raise awareness of this rare disease," says Jacyln Navara, 22, a Rowan senior from Old Bridge, Middlesex County.

On Monday, a volunteer crew organized by Sarah Getting, 21, of Runnemede, arrived to repair the Majusiaks' kitchen floor. Rowan's College of Engineering is like family, and the Majusiaks "are very nice people," says Getting, also a senior. "It's incredible how well [Eric] is doing now."

"We are proud to be able to assist an alumnus in need, and provide knowledge about this disorder to the community," Steven Chin, interim dean of Rowan's College of Engineering, says via e-mail.

Jeff Toughill is president of the Histiocytosis Association ( www.histio.org) in Pitman.

"Eric's an amazing guy. He's what we call a 'histio warrior,' " Toughill says.

He and his wife, Sally, founded the organization in 1986 after their daughter, Bethany, developed the disease. She's now 30 and doing fine, but many histio disorders are fatal.

They're also rare. Only one in every 200,000 children develops Langerhans cell histiocytosis, the disease's most common form. Money for research is scarce, and "that's why raising awareness is so important," Toughill says.

When I visit the Majusiaks, I also meet their dogs, Buttercup and Bella. Tiger, the cat, stays out of view, but on display in the family room are hunting trophies and a duck decoy Eric was able to finish carving recently, now that he's gotten back the use of his fingers.

Their ordeal has taught the couple "to live life to the fullest," Amanda says.

"Don't let the little things bother you," adds Eric. "Don't let big things bother you. You don't know what's going to happen tomorrow.

"Today," he adds, "is a beautiful day."


Kevin Riordan:

Eric Majusiak talks about efforts to raise awareness of the disease that almost killed him: www.philly.com/eric


Contact Kevin Riordan at 856-779-3845 or kriordan@phillynews.com, or follow on Twitter @inqkriordan. Read the metro columnists' blog, "Blinq," at www.phillynews.com/blinq.

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