Gift of Laughter

updated 07/01/1996 AT 01:00 AM EDT

originally published 07/01/1996 AT 01:00 AM EDT

AS USUAL, JASON ALEXANDER IS getting trounced. "Ev? Ev? What is ev?" demands his sister Karen Van Horn, stifling a chortle as her famous brother leans over the mess of letters spread across her living room table and furrows his brow.

"I've never beaten her in a game of Scrabble in my life," he grumbles.

"I always win," Van Horn declares.

"Ev," he shoots back. "I'll use it in a sentence: 'Faced with unsurmountable pressure during an intense game of Scrabble, he relied on ev to win.' "

Rack up another one for big sister. And make no mistake—victory feels good. But for both Van Horn, 48, and Alexander, 36—best known as the supremely obnoxious George Costanza on NBC's hit sitcom Seinfeld—a sad understanding lies beneath the affectionate sibling sparring. Scrabble is not the contest Van Horn most needs to win. A year and a half ago, Alexander's half sister, a human resources accountant at the Texas Commerce Bank in Houston, was diagnosed with scleroderma, an autoimmune-system disorder that usually results in a painful hardening of the skin and, in some cases, a potentially life-threatening scarring of the internal organs. This scarring occurs in about half of the 500,000 Americans who suffer from the disease, causing a 70 percent mortality rate in this group in the first seven years. Scleroderma took the life of Van Horn's mother 39 years ago.

Van Horn also suffers from polymyositis, an inflammation of the muscles, and from Raynaud's phenomenon, which impedes circulation and causes numbness of the fingers and toes—both ailments commonly associated with scleroderma. But as her doctor, Alan Friedman, an assistant professor of rheumatology at the University of Texas-Houston, points out, the real peril is the scleroderma. In the past 10 months, Van Horn has undergone three operations to widen her esophagus because, says Dr. Friedman, "her intestinal system has become so scarred, it doesn't propel food properly. If it gets stuck in her throat, she has to find a way to get it out. And even if food gets all the way down, it is not very well absorbed." As a consequence, Van Horn has lost more than 50 pounds in the last year.

"On the upside," she jokes, "it's the first time I haven't had to diet."

Along with proper medical care, says her doctor, an upbeat attitude is key to Van Horn's survival. That is where Alexander comes in. Troubled and touched by his sister's state, he has become actively involved in her life and health—and in the public's awareness of the little-known disease. In May he spoke before a special Senate committee on behalf of the Scleroderma Research Foundation. He will host their L.A. fund-raiser in October, and on Aug. 3 he will be the keynote speaker at the United Scleroderma Foundation's annual conference. Though Alexander's TV and film careers leave little time for travel to Houston, Van Horn visits her brother in L.A. a few times a year. Between visits she takes the bus to work at the bank, keeps a maternal eye on her son Keith, 24, who plays trumpet in a local funk band—and, come Thursday evenings, tunes in to NBC for 30 minutes of what, for her, is must-see TV

"Just thinking about the role Jason plays cheers me up," says Van Horn. "He's taught me to see the humor in things."

Alexander, though, thinks of himself less as teacher than as awestruck pupil. "Watching her," he says, "I've started being less afraid of the finite-ness of life and, really, finally being more involved with what the quality of life is all about."

Van Horn was 12 years old when Jason was born in 1959 in New Jersey. Her mother, Fay, had died two years earlier, leaving Karen, her father, Alex Greenspan, then 48 and an office manager, and her brother Michael, 19, heartbroken and bewildered. "It was like she was there one day," says Van Horn, "and just gone the next." In 1958 her father married Ruth Simon, a nursing school director, and moved the family to Livingston, N.J. Karen was delighted by the arrival of baby Jay. Says Ruth, who now lives with Alex in a condominium in Coconut Creek, Fla.: "Jay was her real-life doll."

He was also, at times, a real-life pain. On the night of her high school prom, as Van Horn was posing with her date for pictures, little Jay took it into his head to hit the street corner and—to her mortification—scream, "My sister's getting married!" But for the most part, says Ruth, the two were close. While other teenagers obsessed over rock groups, Van Horn listened to Broadway musicals—as did her brother. "I'm 5 years old, listening to Man of La Mancha and The Fan-tasticks," says Alexander. "I was very heavy as a kid, so I'd launch a preemptive strike against other kids by memorizing the material on the albums. They'd be so impressed, they wouldn't kick the hell out of me."

Over the next several years, Van Horn left home to attend Douglass College in New Brunswick, N.J., returned after graduation and left again in 1970 when she married Ralph Jay Van Horn, then a second lieutenant in the Army. Through it all, Alexander was turning his love of musicals into a career. He started singing onstage at Livingston High School (at 15 he adopted the stage name Jason Alexander), and by the time he was 22, he was singing on Broadway in Merrily We Roll Along. In 1989 he won a Best Actor Tony for Jerome Robbins' Broadway. That same year was when he first whined on prime time as George on the pilot The Seinfeld Chronicles.

Alexander admits that his sister wasn't much in his thoughts during his rise to fame. "I was totally self-absorbed," he says. Van Horn lived with her husband on various Army bases in the States, Germany and Japan, and after they divorced in 1981 (he died seven years later), she returned to Texas with son Keith, then 9. Alexander worried about how she would cope on her own. "All of a sudden she's a divorced single mom living in Houston with a degree in Latin," he says. "You had to go, 'Well, we're going to have to help, because she's not going to make it.' "

But Van Horn proved him wrong. She started working in the accounting department at a geophysics company by day and studying for a master's degree in accounting by night—all while raising her son. "She worked her butt off for us," says Keith. No one was surprised when in 1982 she began complaining of muscle weakness—but no one understood, either, when the symptoms wouldn't go away. "The specialists couldn't find anything wrong," she says. "I began to doubt my own sanity. Even my family said it could be emotional."

It wasn't. In 1983, Van Horn was diagnosed with polymyositis. Steroids helped reduce the muscle inflammation and allowed her to keep working. She passed her CPA exam in 1986 and went back to school to earn another master's degree, in human resources management. Though she and Alexander had begun to restore their old bond, their biweekly chats rarely included discussion of her medical condition. Still, says Alexander, "I knew something was going on."

When early last year a severe case of what seemed like heartburn led doctors to diagnose scleroderma, alarm bells went off for Alexander. "All I knew was it killed her mother," says Alexander. "My immediate reaction was, 'She's going to die.' " There is nothing that Alexander wouldn't do for Van Horn—if she would let him. "She'd rather swallow nails than ask for money," he says. But so far, Van Horn's HMO has covered much of her medical expenses. For the most part she can do little more than hope the disease doesn't spread to her lungs, for that would dramatically reduce her chances of survival.

Van Horn has learned to count on her little brother for emotional support. She looks forward to visiting him, his wife, Daena, 39, and their children—Gabriel, 4, and Noah, 5 months—in L.A. "When Uncle Jay is around," says Keith, "you can see her spirit really seem to lift." The feeling is mutual. "Karen is an amazing role model," says her brother, "one I don't think I can live up to."


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