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Matt Hay: becoming a neurofibromatosis advocate and giving back to his community

At 19 years old, when Matt was diagnosed with neurofibromatosis (NF), he soon realised he was not as invincible as he once thought. Now, over 25 years later, he talks candidly about overcoming the challenges of a rare disease diagnosis at an early age, and why he decided to become an advocate for his community

Matt Hay: becoming a neurofibromatosis advocate and giving back to his community

First diagnosis

At 19, Matt Hay was your average college student. He was in good health and, in his own words, “probably a little too cocky.” However, during his second year at Indiana University, he noticed he was having difficulty hearing on the phone, particularly with one ear. While this was unusual, his first thoughts were to assume his exposure to loud power tools as a young boy was the cause—he was an invincible 19-year-old, after all.

That summer, Matt returned to his family home. As time moved on, his hearing continued to decline, and this led his parents to suggest he have an audiogram. This would be the start of his rare journey.

Matt attended the audiogram appointment, confident there was nothing wrong with him. To his surprise, the audiologists couldn’t be sure of what was causing his hearing loss, and three months later referred him to a neurologist for an MRI scan—the last outcome he expected from a simple hearing exam.

On the day of meeting with the neurologist, Matt was still in good spirits, expecting the doctor to send him on his way with medicine and a hearing aid. The MRI results, however, showed he had benign tumours, bilateral acoustic neuromas, on the nerve that connects the ear to the brain. Soon after, Matt was diagnosed with neurofibromatosis.

While this was devastating news at the time, Matt now recognises how fortunate he was to get the attention of specialists so quickly. “My school was only an hour away from one of the leading clinics, so my path to diagnosis was much more direct. In hindsight, I was lucky.”

“I can’t control what’s happened to me, but I can control the way I deal with it. One of the things that helped me to do that was celebrating small wins… finding things each day to say, hey, here’s something I couldn’t do yesterday; or today, I took 20 steps, and yesterday could only take 12.”

While the road to diagnosis was a straightforward one, his health would continue to decline. His neurologist would tell him that as well as losing his hearing, he would probably lose some facial movement, nerve sensation and his sense of balance too. Despite this terrifying news, Matt was still that overconfident 19-year-old, convinced the worst would never happen to him.

Matt talks about how losing his hearing prompted the start of a grieving process. “My mentality about approaching a lot of things in life turns out to be a healthy one for living with a rare disease. I tend to move through stages of grief quickly, I’m able to put things behind me in a healthy way.”

Matt believes that being his own self-advocate—asking more questions, for example—would have improved his relationship with the doctors. But at the time of his diagnosis, being confronted with acronyms and medical jargon didn’t allow him to feel part of the conversation. He maintains today that you can never ask enough questions.

The tumours grew. In his late twenties, he finally lost all hearing because of the nerve damage. This was traumatic, but it was something that Matt was prepared for. What he wasn’t prepared for was the discovery of tumours in his spine.

Though small, the tumours were blocking 80% of the flow of the spinal fluid, and this problem required an operation. “One of the challenges with neurofibromatosis is the number of different ways it can impact a person. You start having tumours grow in dangerous and difficult-to-operate places. The side effects of the surgery and even the treatment can be difficult.”

Waking up from the operation, Matt discovered he was unable to independently move his hands and legs—he had lost all feeling. “You’re thinking about hearing loss, and then all of a sudden, you wake up in a long-term care facility unable to walk.” Matt would later go on to have around 20 surgeries related to neurofibromatosis.

“The day that I woke up… the entire concept of sound was a memory to me. No breath, no footsteps, no running water or brushing your teeth sounds. Even with all that support, it was still the loneliest I’ve ever felt in my life.”

Although his experience has been mentally and physically challenging, Matt’s determination and his family’s continued support kept him on the right path. After a year of recovery, being able to move from a wheelchair to a walking frame was welcome progress. At around that time, Matt was dating a girl who understood the science of what was happening, from her time studying in medical school. This year, they celebrated their 20th anniversary together.

As his mobility improved, Matt was gradually able to start walking again, thanks to planned training. In time, as he got tougher, he even began to run marathons, including the Boston marathon as well as a full Ironman triathlon, to raise funds for the National Neurofibromatosis Foundation. “I could look back and say, a year ago I couldn’t run a mile, and today I ran 13.”

As his confidence grew, he and his girlfriend, now wife, would become involved with the coordination of endurance events, raising more money for his community. Matt became interested in how donations were used, and he eventually found himself on the board of directors for an advocacy group.

Matt Hay: becoming a neurofibromatosis advocate and giving back to his community

The road to advocacy

Matt’s decision to become involved with advocacy came from his own experience of being diagnosed with a rare disease. “Even with all that support, it was still the loneliest I’ve ever felt in my life… I can’t imagine what it would be if I didn’t have that kind of support, or I didn’t have that network. That was really day one for me of what advocacy would be in my future.”

“I felt like my career needed to somehow involve making sure nobody ever feels as lonely as I did. It took me about 25 years to fulfil that promise.”

Happy in his sales job, Matt almost turned down an offer to become a director of patient advocacy for a global pharmaceutical company; however, after thinking about how much he could amplify patient voice for his community, he decided to accept and has been working at Alexion since early 2022. Technological advances have allowed Matt to communicate with others, like any able person could—thanks to artificially intelligent captioning, there’s no obstacle to his being able to join the conversation.

Matt says that he was lucky to have an audiologist who was interested in caring for him as a patient, rather than seeing him as a business opportunity to sell a hearing aid. “I could have very easily walked out of there with a hearing aid, and three months later, I would have needed a bigger one and three months later a bigger one, as my hearing continued to decline.” That fortunate interaction at the start of Matt’s rare journey inspires him now he is an advocate raising the patient voice for people with neurofibromatosis.

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