Pennsylvania native Tom Caamano has always loved movies, a passion passed down to him through the generations. The 39-year-old fondly remembers going to the movie theater with his father as a child and recalls stories he heard growing up from his grandfather about how movies helped him learn English after arriving in the U.S. from Spain.

When it came time to choose a career, Tom followed his passion for storytelling and became a director. In his career to date he has worked on several TV series in various capacities, including in directing, post-production and editing. “I’m basically a jack-of-all-trades,” Tom says.

Tom, who received a surprise diagnosis of mitochondrial disease in 2009, perseveres despite symptoms, which include muscle weakness and fatigue, that threatened to derail his career. Today, he is not only thriving, he’s helping others facing similar diagnoses feel empowered, too.

“Good and Bad Months”

Growing up, Tom was athletic, earning all-state honors in football. After graduating from Penn State University, he stayed active by going to the gym, and as his production career developed, he worked a grueling schedule, standing all day with a heavy video camera, traveling constantly and working until late into the night.

Then, at age 29, Tom contracted MRSA from the gym he went to. He found himself in and out of the hospital for several months, and, in order to rid himself of the infection, he had to endure heavy doses of strong antibiotics. After recovering from the infection, Tom was back to normal for a few months. Then, seemingly out of nowhere, he started experiencing unexplained fatigue and weakness.

“I had no energy at all,” says Tom. “I slept a lot and had a tough time physically getting through the day.”

Other symptoms included temporary paralysis and a potassium level near zero. This led Tom on a long, frustrating diagnostic odyssey that lasted nearly a year.

“I visited general practitioners, kidney specialists, and no one knew what was wrong. After a year of being a lab rat, I got a deep tissue biopsy; they found red fibers, and I was finally diagnosed with mitochondrial disease.”

Although it was a relief to finally get a diagnosis, Tom says, “The first two years were very difficult. The fatigue was intense. I went from good and bad days, to good and bad weeks, then to good and bad months.” Additionally, weakness began to present itself in his hips and shoulders, making holding a heavy video camera on his shoulder difficult.

For someone who used to be athletic, the sudden and extreme fatigue and weakness was difficult to accept, especially with a new family. “When everything goes haywire, I have to wait it out, but it’s difficult. I have two daughters. The father I want to be is so different than the father I’m able to be. But, at least I am still able to be there for them.”

Today, Tom receives his care at an MDA Care Center, from Dr. Terry Heiman-Patterson at Good Shephard Rehabilitation in Allentown, who he says has been a “godsend” to him in stabilizing his care.

After initially experiencing frustration, Tom developed techniques that have enabled him to maximize his energy level and effectiveness at work.

“I eat healthier, take vitamins, restrict my exercise to walking and I do my best to be energy efficient,” he says. “When I know I have a shoot coming up, I rest for 3 days, and plan on a couple days of rest afterwards.”

In addition, he is actively seeking out equipment that will help him with the demands of day-to-day filmmaking. “I’m trying to get this piece of equipment called an easyrig that will help me be able to film again, something that straps on my back and helps support the camera.”

Even with the best preventive measures, however, Tom still experiences periods of fatigue. “I call them ‘bad mito flare-ups.’ There’s just not much I can do.”

An Example for Others

Today, Tom continues to work full-time, mindful of his strength and energy. His latest endeavor is a documentary called True North, about cancer survivor Sean Swarner, who is traveling to the North Pole with a special flag with the names of thousands of cancer survivors on it. Although Tom is not traveling to the North Pole with Sean, he has directed, produced and shot the majority of the other footage for the documentary and is actively involved in its post-production and editing.

Sean’s uplifting story has helped to change Tom’s perspective on living with mitochondrial disease. He’s seen firsthand the impact Sean has had on other cancer patients, and Tom realizes that if he can have a similar impact on people with his own disease, that is a special feeling.

“I have a very good friend who has ALS (amyotrophic lateral sclerosis). I always felt that I don’t have the right to be upset and angry at having [mitochondrial disease] because there are so many other people who have something worse than I do. I am fortunate I am still able to work. Through filming the documentary and working with Sean, traveling the country and speaking with cancer survivors, it humbled me.”

Tom continues, “Sean’s shown me that if I am able to provide any type of inspiration for someone at rock bottom dealing with mitochondrial disease, then it’s my responsibility to do that. If I am capable of helping anyone that’s doubting whether they should go back to work, I am proud to be an example.”

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