Hank Steinbrecher: “I made a decision whether I should discuss it or not discussing it with people,” he said. “I think it may help other people with their journey.” (Photo courtesy of Warren Wilson College)

By Michael Lewis

FrontRowSoccer.com Editor

Hank Steinbrecher is enduring some tough times these days, but he wanted to share his experience it could “help other people with their journey.”

The former and popular U.S. Soccer secretary general revealed Thursday that he has been battling Fabry disease. Fabry disease affects the heart, lung and skin.

Steinbrecher talked about his ailment publicly for the first time during a One on One conversation with Dean Linke at the United Soccer Coaches digital convention.

“I made a decision whether I should discuss it or not discussing it with people,” he said. “I think it may help other people with their journey. The alternative is you don’t say anything about it and you fade away. And I’ve never believed in fading away. So Ill discuss it, I’ll talk about it and talk about it, candidly and honestly.”

Steinbrecher, who for many soccer fans was the face of the organization during his tenure from 1990-2000, recently was diagnosed with Fabry disease.

“I’ve had heart trouble,” he said, adding that he had his first pacemaker put in 2003. “It’s been continuous and getting worse throughout the years and recently I was diagnosed with Fabry disease, which is an inherited disease from your mom That is similar in symptoms to heart failure and kidney failure. So often misdiagnosed. The only way to find out is genetic testing. So, we have the genetic testing done and I have Fabry disease, which explains a lot, but it doesn’t help the situation any.”

The National Soccer Hall of Fame member recently needed to be hospitalized because of the malady. At this time, there is no cure for the disease.

“This past month I’ve had a pretty a pretty rough go of it,” said Steinbrecher, who grew up in Levittown, N.Y. “Part of the problem with this disease is you going to get tachycardia, which is the heart beating very, very rapidly. At rest my pulse was about 130. But it was lasted for five days. So, what happens there is as your heart contracts so fast. It can’t expand to get oxygenated blood into the heart to push out to your organs. So, your the rest of your organs shut down. They get ill and they shut down. It’s called cardiogenic shock.

“This occurred about a month and a half ago, and I was five days in intensive care. And another five days just in hospital, then released and, you know, back up walked a mile and a half yesterday. So, you know, trying to kick ass.”

Steinbrecher suggested “a fantastic website” for more information. You can visit this website: https://www.fabrydisease.org/.

He recently was honored by the first college at which he coached socer. Warren Wilson College of Swannanoa, N.C. named its soccer and lacrosse complex in honor of him.

“Words can’t describe, you know, getting verklempt,” Steinbrecher said. “It’s very, very touching at the time of my life. And just happy that the Lord has given me the opportunity to see it and even given a lot of luck to get a lot out of it. My boys at Warren Wilson really came through. I mean, you have to understand what that institute is like.”

During Steinbrecher’s five-year tenure as a coach and athletic director at the school, the college had 500 students.

“It was an educational commune,” he added. “The kids had to work half the day on a crew to maintain the campus, and went to school and other the other half, and then played soccer in the afternoon. We put together a really good team. Those boys have stayed incredibly close over the years. They just recently named their athletic complex and my honor. So, I was very pleased.”

Here is a related story:

THE BIRTH OF THE GATORADE SHOWER: Former U.S. Soccer secretary general Steinbrecher played a role making that football tradition popular

Front Row Soccer editor Michael Lewis has covered 13 World Cups (eight men, five women), seven Olympics and 25 MLS Cups. He has written about New York City FC, New York Cosmos, the New York Red Bulls and both U.S. national teams for Newsday and has penned a soccer history column for the Guardian.com. Lewis, who has been honored by the Press Club of Long Island and National Soccer Coaches Association of America, is the former editor of BigAppleSoccer.com. He has written seven books about the beautiful game and has published ALIVE AND KICKING The incredible but true story of the Rochester Lancers. It is available at Amazon.com.