Matt Minelli copes with chronic pain of rare disease


Brandon Keeling

Matt Minelli in Arsenic and Old Lace.

Maddie Kindig, Reporter

Matt Minelli, senior, has spent much of his time pushing his own limitations—limitations set in place by Fabry Disease, an affliction he’s dealt with his entire life.

Fabry’s is an inherited disease passed through the X chromosome. The disease is brought on by abnormal deposits of a particular fatty substance, globotriaosylceramide, in blood vessel walls throughout the body.

The inheritance of Fabry Disease becomes quite the cycle. If Minelli has a daughter, she will inherent his X chromosome resulting in a continuation of the disease.

Common symptoms of Fabry Disease include burning pain in the hands and feet that worsens with exercise and illness as well as cloudy vision, hearing loss, ringing in the ears and sweating less than normal.

Minelli said that the worst part about his condition is the pain. He plays on a recreational basketball team, which doesn’t help his physical state considering that strenuous exercise only worsens the pain in his feet and hands.

Sports are also harder for Minelli to play because his body doesn’t sweat as much as the average male, which means he often gets easily overheated and worn out.

This pain won’t stop Minelli from continuing to play basketball or cause his love of sports to wane.

For his pain and other symptoms of his condition, Minelli is treated for his disease biweekly from the comfort of his own home.

He is given infusions by his nurse, Steve, a man in his 50’s whom he has grown very fond of over the years. Steve’s company makes infusions less unpleasant for Minelli.

The pain he receives is a nerve pain, which means that all of his pain receptors are sending messages to his brain that a physical pain is present when it really isn’t.

One thing that takes his mind off of all this pain is acting. When Minelli acts, so much of his focus is on lines, movement and just living in the character that he almost forgets about the burning in his hands and feet.

Those messages sent out by his pain receptors are temporarily ignored when he’s onstage performing.

In fact, during the State Thespian Festival in early January, Minelli had been walking around the convention center quite a bit, and his pain started to take over his body.

While he wanted to be able to attend every show and participate in every activity, the searing pain he felt made it difficult to walk or even leave his room to eat meals.

It became so severe that he had to be taken to the emergency room by two of the thespian festival chaperones, and he spent most of that day there with an IV in his arm. He was even carried back to his hotel room by his friend, Ryan Hovey, senior.

Minelli stayed calm through the entire experience and didn’t let the pain keep him from performing.

The next day he played three different roles in “Peter and the Starcatcher” without missing a single beat. Though he had just been lying in an emergency room hospital bed, and he was still experiencing an exceptional amount of pain, he went on stage and performed for almost 2,000 people as if he were in perfect health.

This is just one of many examples of how Minelli overcomes his disease in the pursuit of things he’s passionate about.

He has  always had an “all in” personality and tends to put his all into everything he does. Minelli will not  let his disease keep him from anything he wants.