Two years ago, Mats Wilander was criss-crossing the US in an old Winnebago camper van when he came to the conclusion that perhaps more could be done to support those suffering from Epidermolysis Bullosa or EB, an incurable genetic connective tissue disorder dubbed ‘The worst disease you’ve never heard of.’
At the time Wilander was touring the country with his travelling tennis clinic ‘Wilander on Wheels’, a dual venture with close friend Cameron Lickle, former captain of the US Naval tennis team.
The clinic offers club players nationwide the chance to hit with a legend and improve their game, at affordable prices.
Alongside the clinics, Wilander had held an annual golf and tennis day for the past 14 years to raise funds for DEBRA of America, a charity which raises money to provide support for families of children with EB.
20 years earlier, Wilander had never heard of EB as he amassed a total of seven Grand Slam titles, engaging in compelling rivalries with Stefan Edberg, Ivan Lendl and Boris Becker during the 1980s and early 1990s.
But that changed with the birth of his fifth child Erik, now 16.
“We saw something strange after a couple of months,” Wilander remembers.
“When he was lying down he got these blisters on his hand and his body. Then when he started moving around the blisters developed on his knees. We realised something was not quite right and then we found out what it was.”
Those with EB suffer from extremely fragile skin which comes out in blisters or tears from the most minor friction or trauma, often resulting in open wounds.
Wilander says that this leads to them being referred to as ‘butterfly children’, simply because they’re ‘as fragile as the wings of a butterfly.’
Wilander says his son is lucky in many ways as the condition can be lethal.
The most severe forms of EB mean that sufferers are at risk of tears to internal organs, meaning many die before the age of 30. While restrictive, his form of the disorder means he’s occasionally able to partake in physical activities with the altitude and lack of humidity in his hometown of Sun Valley, Idaho meaning that his skin does not drastically blister.
But his experiences have made Wilander determined to do more to provide support for families, starting the Mats Wilander Foundation last year.
“The research side is being done at Stanford University, they’re searching for a cure,”Wilander says.
“But it’s hard for many families because the American medical insurance administration is not that helpful when it comes to prevention. And in this case that’s prevention of skin trauma, infection, dealing with complications.
They’re really good at paying for surgeries but why should these children go through a bunch of pain that they really don’t need to, they’re in enough pain. So we’re trying to raise money to support the families and help them that way.”
You can read more in the next issue of Tennis World magazine which will be out in mid-October.