On tour starring as Gaston in Beauty and the Beast, Matthew Farcher was just 22 when the production came to Houston, Texas. But something happened shortly thereafter that would change everything, but not for long. While on tour, Matthew found himself in the hospital and after a series of miracles, he was diagnosed with a rare disease called Atypical Hemolytic Uremic Syndrome, or aHUS.

In a town far from home, Matt was never alone.

We recently caught up with Matthew for an episode of PSI’s podcast, Rare Perspectives, about his journey with aHUS. During our conversation, we asked Matthew about one of those ‘miracles’ that led to his diagnosis and chance initial treatment:

“Trying to inform the right people. I’m trying not to scare anybody,” said Matthew Farcher. “My mom’s in New York. I’m in Houston. Like there’s no familiar ground where we are and then a student doctor. That’s probably not the correct term but a student who is studying to be a doctor. Yeah, he was doing the rounds and had just learned about TTP and aHUS and he was pretty adamant about that being the diagnosis. He was like, I’m pretty sure this is it. So, the right people looked into it and they all agreed and for some reason someone was supposed to receive the medicine that is the only medicine you use for aHUS that day in the hospital, but they didn’t come. So, I actually got the dose of medication without it being like a hundred percent confirmed. They went for it because it was really the only medical option at that point. That started a month-long journey of being in a hospital bed.”

What Is Atypical Hemolytic Uremic Syndrome?

aHUS is a rare disease that is estimated to affect 1 in 500,000 people in the U.S. On a global scale, only about 20,000 people are thought to have this disease.

According to the National Center for Advancing Translational Sciences, Atypical hemolytic uremic syndrome (aHUS) is a disease that causes abnormal blood clots to form in small blood vessels in the kidneys. These clots can cause serious medical problems if they restrict or block blood flow, including hemolytic anemia, thrombocytopenia and kidney failure. It can occur at any age and is often caused by a combination of environmental and genetic factors.

To more simply define what is occurring with Atypical HUS, ahusallianceaction.org writes,

“aHUS patients have symptoms of anemia (extreme tiredness) and fluid buildup as an outcome of the kidneys not working. Medical professionals use medication, therapy, surgery, and other treatments to help lessen the symptoms and effects of a disease.”

Rediscovering Hope and Health With PSI

For anyone who has been diagnosed with a rare disease, the diagnosis itself can bring such relief. However, if a treatment is to be had, it’s the overwhelming cost of that treatment that can become a burden too much to carry. For Matthew and his family, and thanks to a case manager, PSI was just a call away:

“My mom actually made the initial connection,” Farcher said. “She was on the phone with our nurse case manager at the time. We had gotten out of the hospital. We had gotten off of dialysis. So, we were just starting to shift into a normal life back here in New York. And then, my student loans hit, and all the medical bills started coming in for my month-long stint at the hospital. All of those things started hitting all at once and that was the first time I remember my mom being even a little bit stressed or worried. So, the nurse case manager suggested PSI and within a half an hour of doing research and calling the right people, my mom was like, ‘this is the company. These guys are gonna hopefully help us because it sounds like they’re the leaders in true patient advocacy and helping families that are in these burdensome situations.’

So, PSI was immediately the greatest connection for our family. They really helped us out and helped point us in the right direction. Dana, the founder, is really who clicked things into perspective for my mom, given that the place he started the foundation as a patient who understands the importance of helping out families regardless of their financial life. If you get hit with forty thousand or tens of thousands of dollars’ worth of bills, it’s an unexpected dent in your life. And it makes the recovery process harder. There are no parents that are going to say, ‘my kid isn’t worth it’ and to barter their house, but you don’t want a family to have to go through that in order for their kid to have a normal life again.

So, PSI really came through and really helped out. They relieved a lot of stress and anxiety from my mom which I’m sure she was already going through millions of emotions during that last couple months anyway, so, you know for myself included, but definitely my parents and helping relieve the financial burden or at least understand how it’s possible to get through it together with their help. They were really incredible.”

Matthew Farcher On Rare Perspectives

Over the course of our one-hour conversation with Matthew Farcher (Pretty Woman Broadway Production, Beauty and the Beast National Tour), Farcher shares his rare perspective on living life with rare disease and how his diagnosis story has informed his life and career. During our call, Matthew also shares with us about how he learned of his rare disease, his acting career, baseball, and the power of family.

You can listen to part one of our conversation with Matthew Farcher on Apple and Spotify today. Part two will be released on June 11th.

To listen on Apple, click here.

To listen on Spotify,  click here.

Have You Been Diagnosed with Atypical HUS?

At Patient Services, Inc. we aim to provide peace of mind to patients living with specific chronic illnesses by providing financial assistance to eligible persons.  To learn about possible assistance opportunities, visit the Illnesses page of our website or visit www.needymeds.org.

To read other rare perspectives stories about patients with aHUS from Patient Services Incorporated’s patient blog, click here.

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