Since the pain forced him to leave his job, which required him to stand on his feet for hours on end, Evashko has seen countless doctors. The most memorable advice he received was when a physician told him to relax.

Like a different person

"Marfan Syndrome, the way it was explained to me, it’s basically an issue dealing with the connective tissue, the skeleton, muscles, eyes, heart, lungs," whispers Evashko uncertainly.

It’s June 14, 2008, more than three years since his diagnosis, and Evashko still isn’t completely comfortable talking about it.

He’s sitting in the Bogota Public Library, his long arms crossed in front of him. One can imagine that if he stretched out, he could wrap his arms more than all the way around his slim torso. There’s no way of being sure, though; Evashko keeps his arms tucked close to his body as he leans forward slightly.

Marfan Syndrome, he continues, now speaking a little louder, is a genetic disorder. Evashko must have been born with it, though he didn’t start showing any serious symptoms — the aches, the pains and, finally, the heart problems — until he was close to 30 years old.

"When I went to see the cardiologist, he didn’t know how to break the news to me," says Evashko, now 35. "My aorta had already ruptured. There was no way of telling when. I could have been walking around like that for two days or two weeks."

Evashko was rushed to the hospital for emergency surgery. All he remembers of the ambulance ride is being asked if he wanted to watch a video documenting the operation. Needless to say, he did not take the technician up on the offer.

At the hospital, doctors repaired the aorta and inserted an artificial valve. Evashko was under observation at the hospital for about a week, but before returning home, he was dealt some hard-hitting news.

"They said it wouldn’t be the same as patients with regular heart surgery. I couldn’t go back to normal."

Evashko was put on blood thinners and blood pressure medication to control his heart rate, and instructed to follow a strict low-sodium diet and limit his physical activity. He will get echocardiograms and CT scans for the rest of his life, which, if he follows this new set of rules, will most likely be as long as that of a healthy person.

"It’s strange," he says. "When I was younger, I was like a hyperactive teenager. Now I see myself doing things that older people do. I used to love tennis. I played softball with a group. Now I’m careful going down the stairs. There’s so little I’m supposed to do. You really feel like a different person, which is hard to explain."

Missed connections

Vicky Arias’ son, Lou, was diagnosed with Marfan Syndrome when he was 7 years old.

"He was always very tall," says Arias. "We’re a small family. Doctors always said he was fine, but I noticed something wasn’t right."

At the age of 5, Lou was diagnosed with and treated for scoliosis but Vicky, a self-described "neurotic parent," wouldn’t let well enough alone. Mother and son started making trips to various specialists, seeking second opinion after second opinion.

"Finally," remembers Arias, "a doctor said he had Marfan and it was very serious."

Lou, like Evashko, fit the bill of a Marfan Syndrome sufferer to a tee. Tall, lanky and long-limbed, both have exhibited skeletal deformities and enlarged aortas. They are two of anywhere from 50,000 to 200,000 Americans who are believed to have Marfan Syndrome.

Evashko believes he inherited the disorder — his grandfather was also tall and slim, and died at the age of 58 due to heart trouble — and Arias says Lou, now 27, was one of a rare breed of babies born with a spontaneous genetic mutation.

Lou, like Evashko, has had heart surgery — two heart surgeries, in fact, as well as back surgery.

There is no cure for Marfan Syndrome, and both men will have to monitor their conditions with regular medical exams and increasingly strict lifestyle guidelines as they age.

And, like Evashko, Lou has battled with the emotional consequences of what could be viewed as a purely physical condition.

"He had to come to grips with ‘Why me?’" says Arias.

The past 20 years of both her son’s life and her own are dotted with a constellation of doctor visits and surgeries, as well as conferences held by the National Marfan Foundation.

"I got involved really because I just felt a need to get a connection," says Arias. "It was a very busy life. I needed to go somewhere with my anxieties."

The foundation offers a variety of educational and support services, but it didn’t take long for Arias, a Township of Washington resident, to realize there was no support group in Bergen County. So, two years ago, she started her own.

In addition to launching efforts to support the foundation’s overall goals — raising awareness, especially among educators, school nurses and coaches, and hospital staff — the meetings allow members, who hail from Emerson, Ridgewood, Ho-Ho-Kus and beyond, to share experiences, concerns and helpful information. There’s only one problem: Arias has only six members in her group.

"The meeting is really hurting," she admits sadly.

Evashko, too, has found "connections" through the National Marfan Foundation. He receives newsletters and has made contacts through Internet forums.

"You get on these e-mail groups and you talk to people with similar stories," says Evashko. "But I’ve never met anyone face-to-face who has this thing."

I’m still me

It’s nearly 1 o’clock on what is turning out to be one of those hot, almost too hot, June afternoons, the kind that’s perfect for a dip in the pool or a backyard barbecue. But standing in the growing heat outside the library, Evashko is faltering. There won’t be any swimming for him this afternoon, and many typical barbecue foods don’t fit into his diet.

He shields his eyes from the sun and looks around. Right now, he’s wondering if he can even walk home.

"I like to walk," says Evashko, who lives less than one mile from the library. "I walk everywhere I can. That seems to be my main form of exercise. But on hot days like this…" His voice drifts off.

For Evashko, moments like this, when he is reminded of what he can no longer do, are the toughest. He calls the 31 years before his 2004 surgery "Life, Part One" and everything since "Life, Part Two." Life Part One didn’t mean much until Life Part Two took away things like pizza and tennis. It turned out Part One meant freedom, and Part Two, well, has made him a sort of prisoner in a world that he doesn’t feel completely a part of. Fear grips him in his sleep, and depression can last for days.

"I don’t know if anyone [who doesn’t have Marfan Syndrome] gets it or not," says Evashko. "People have misconceptions. They say, ‘Maybe he’s just lazy.’ They just don’t understand."

Still, Evashko is working to regroup and find some semblance of the "normal" life he once knew. He currently lives with family in Bogota and recently took on a part-time job, working a maximum of 20 hours a week to avoid feeling completely physically worn out. He has his walks and regularly meets his friends for coffee. He’s not as active as he used to be, but he knows his life could be much more difficult.

"There are some people I talk to in the e-mail group and they’re really incapacitated. For most people who have it worse, their routine has to be stricter. Some of them are in bed all day."

They are the reason Evashko is now speaking out. He hasn’t heard of Arias’ support group, and asks for her contact information; it could be exactly what he needs right now.

"I try to remember I’m still me," he says. "I want to help other Marfan patients find themselves again."

For more information about Marfan Syndrome, visit www.marfan.org. For more information about the Bergen County National Marfan Foundation support group in Township of Washington, call Vicky Arias at 201-722-9674.