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Seeing Isn’t Believing: Marie Aprile’s Story of Living Beyond MHE and Chronic Illness

Be Inspired | Do Good

As a child, Marie Aprile was diagnosed with multiple hereditary exostoses (MHE). This disease is also known as multiple hereditary osteochondromatosis, and it’s a rare bone disease in which bony tumors grow from the growth plates found at the ends of long bones. People living with MHE grow accustomed to a cycle of pain and treatment, which for adults like Marie is limited to surgery to remove the tumors. To date, Marie has undergone 42 tumor removals.

Although Marie has been plagued by MHE, as well as 11 other chronic diseases that include fibromyalgia, chronic migraines, depression, anxiety, anorexia, and Reynaud’s Syndrome, she has worked hard to become a primetime television director. As it stands, Marie directs 10 broadcast news shows every week for her local NBC station.

One of the biggest phrases that Marie says she wants to drill into people’s minds is that seeing is not always believing. On the outside, she appears to be a healthy young woman, but she’s usually in pain at any given time. For instance, the act of walking is painful at times, and Marie will park in handicapped spots when she needs to. Marie says the amount of dirty looks she gets for doing so is remarkable.

Over the years, she’s grappled with feeling disgusting and worthless, but after a cancer scare in 2015, she says she realized that she’d been wasting time that could have been spent happy. From that moment on, she vowed to replace every negative thought with something positive. That strategy has helped her become an even stronger advocate for chronic illness, including MHE.

Just last year, Marie started the hashtag #MHEandME. By doing so, she creates and shares content while connecting thousands of people. Her movement is shedding light on the reality of MHE and the amount of people around the world who suffer with this debilitating disease.

Marie’s success as a television director and advocate began when she was a child. She often felt alone and pushed away by other kids, so she delved into her schoolwork. In the 8th grade, she took a journalism class. While it put her out of her element and in front of her student body, it also helped her become comfortable in front of the camera. Her newfound confidence snowballed into her becoming a state championship public speaker. At 17 years old, she landed an internship with her local NBC affiliate, and by age 19, she was a director.

The key to pushing through the pain, she says, is to keep her mind busy. Her job is fast-paced, and outside of that, she spends time focusing on artwork, makeup art, and being an advocate.

It’s in small moments, however, that she gets her most powerful inspiration. After a recent hip surgery that left her out of work for 12 weeks and learning to walk again, Marie watched a sunset. She watched the warm, vibrant colors spread out before her and wondered how many sunsets she’d missed.

In those moments, Marie gathers the momentum she needs to continue living a fulfilled life and helping others do the same.

“There’s strength in vulnerability,” said Marie. “It’s ok to open yourself, because when you open up, the amount of people who come through that door is just insane.”

Since opening up about her struggles with chronic disease, Marie has noticed that more and more of her friends are also opening up about their “silent” diseases. As Marie says, many people essentially live double lives. During the day, they are parents and hard workers, but in between, they are going back and forth to doctors, dealing with the side effects of new medicine, and trying to live happily in the midst of ongoing pain.

People who want to help spread the word about MHE can follow Marie on social media, share posts, and simply listen to the stories of others.

Marie is working to show others that living a fulfilled and happy life – even with a chronic disease – is possible, and she’s building a community where people can normalize and share their daily struggles and successes.

 

For more information about MHE or to hear about her transformation first-hand, listen Marie’s full podcast.

Written by Heather Hawkins
Photo credit: Trevor B Photography

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