Tough love

Wilander seeks awareness for ill son

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Posted: Tuesday December 21, 1999 06:53 PM

Former tennis great Mats Wilander says his family has learned to live with his son Erik's disease. Clive Brunskill/Allsport

(CNN/SI) -- There are days when it seems nothing could disrupt the playfulness of the spirited two-and-a-half-year-old.

On other days however, the life of Erik Wilander, son of former tennis star Mats, is neither carefree nor pain-free.

"I think that there's part of him that feels when he feels the pain, and he gets a little down mentally," says the elder Wilander. "I know the days when he doesn't feel pain physically, he's definitely more cheerful. He definitely doesn't cry as much.

"I don't think he knows what's wrong with him, but he's getting the fact that some days he takes it more easy, and when he can run, he runs maybe twice as much as the other kids."

What's wrong with Erik, the third of the four Wilander children, is that he suffers from a rare skin condition -- Epidermolysis Bullosa, or EB, which affects roughly 100,000 people in the United States. It's a condition that makes the sufferer's skin susceptible to blistering on contact. And though Erik's is only a mild form, it constantly impacts his young life.

"He'll come down the stairs, he'll actually crawl down the stairs," said Wilander. "He says, 'I'm crawling today.' I'll say, 'Okay,' because in the summertime, it'll get very bad -- five, six, seven blisters a day."

As a small example of how this disease has impacted young Erik's life, Wilander's wife, Sonya says extra precautions must be taken.

Erik Wilander doesn't let his bad days overshadow his good days. CNN/SI

"As soon as he gets to school, his shoes are taken off," she said. "He doesn't wear shoes at school. And then they're put back on when he goes out."

While Wilander says the family has learned to live with the disease, the greater concern is with his son.

"You have to pop the blisters every night and do all that." He says. "Hopefully, he'll learn to live with it."

The EB condition causes the skin to blister from friction, resulting from everyday actions like walking or wearing a car seat belt. In severe cases, the blisters can cover 75 percent of the body, including internally, where scar tissue can make it difficult to swallow, eat or breathe.

Fortunately for the Wilander's, Erik is among the 50 percent of sufferers whose strain is not life threatening. However, Dr. Angela Christiano, an assistant professor of dermatology/genetics at Columbia Hospital in New York City says Erik's plight is a very painful, debilitating disorder.

"In the most severe forms of EB, the blisters form deeper in the skin and they actually scar as the patients with those forms have a life-long, chronic blistering and scarring."

As a worldwide celebrity with seven Grand Slam titles to his credit, Wilander has taken a proactive role in combating EB, trading on his fame to generate public awareness. Last October, he hosted a charity tennis and golf tournament in Westchester, New York, raising funds toward finding a cure.

Mats Wilander finds some comfort in the way Erik copes with his condition. CNN/SI

"You would never wish EB on anyone," Dr. Christiano said. "But to say that there's a celebrity with a disease in their family who's willing to come forward and make a statement and talk about the disease and create awareness is such a gift for the researchers particularly." And she adds for the other families as well, "because it really brings a heightened awareness to the problem that isn't there before."

And because this is a battle that has become so personal, Wilander the celebrity wants to help the cause as long as it doesn't interfere with his duties as a parent.

"I'm certainly willing to help as much as I can, as long as it doesn't take away from my role as Erik's father."

The Wilanders are intent on making Erik's life as normal as possible, allowing him to do as much as he safely can. And while the fact he may never follow in his father's footsteps is inevitably a source of occasional regret, their main concern is with treating his condition and waiting for a cure.

"I think there will be days when you are sad," says Sonya. "When you see all his friends are going off to tennis or going off to play football or whatever it is when he becomes a teenager and he won't be able to do it. But I'm sure he'll find something else. Maybe if he's not on the sports fields, he'll be in the classroom doing it. And we'll have an Einstein or something."

"I think that his highs and lows have already started in life," Wilander points out. "Some days are bad, some days are really good. And I think, as a kid, in general, if your days are pretty good, you get sort of better for awhile. So I think he's getting used to life at an early age."

A strong love from within the family will go a long way in making sure that young Erik is given every chance to succeed and live a normal life.

 

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