Graduating student diagnosed with genetic disease finds ‘light bulb’ moments at Iowa State

AMES, Iowa – A diagnosis of a rare genetic disease soon after Jacob Lowe started classes at Iowa State University didn’t extinguish his drive to earn a degree.

In fact, the diagnosis of limb girdle dystrophy, a disease that causes a weakening of the muscles in the arms and legs, may have intensified Lowe’s desire to apply his creativity to solving real-world problems. Lowe calls himself fiercely independent, and as mobility becomes more of a challenge, he predicts he’ll need to rely heavily on his education, inventiveness and innovative spirit.

His studies in industrial design sharpened all those skills and helped him embrace the “light bulb” moments when a new perspective sheds light on a design problem. At the end of the current semester, he’ll complete his degree and a final project that could pave the way for helping others who have mobility challenges.

During the moments he wondered whether it was worth it to continue his education in the wake of his diagnosis, the happiness he experienced solving design problems with creativity was part of what kept him in the program.

“Once you get all the right pieces put together, you just kind of get the light bulb and it’s like, ‘That’s perfect for what needs to be done here in this scenario,’” Lowe said.

Following his father’s example

Lowe grew up in Dysart, in Tama County. His father owned an auto parts business for which he built specialized engine components from aluminum molds. Lowe saw how his father applied both his engineering skills and creativity to fashion parts that weren’t available anywhere else on the market and wanted to follow his example.

“Growing up, my dad was always kind of tinkering with different things,” Lowe said. “He started his own business when I was maybe 12, and so I’ve watched him kind of grow that, and it’s all been through the power of his mind and things he designs, so that made me want to go into industrial design.”

Lowe followed two of his sisters to Iowa State University, where he initially enrolled as an undeclared engineering major. But he found the engineering curriculum didn’t appeal to him as much as he’d hoped. He discovered the industrial design major offered through the ISU College of Design, which sounded like a better fit. The program trains students for a career in a huge range of commercial product design and service industries. Students enrolled in the program spend most of their time in the Armory, a campus building that houses open collaborative studios and fabrication facilities. Industrial design students work on multiple real-world design projects during the program. Students might collaborate with an agricultural machinery manufacturer one semester to design a more ergonomic tractor cab and design a carrying case for snowboards for an outdoors outfitter the next semester.

For someone like Lowe, who wanted to harness his creativity to design new products and technologies, the program was a perfect match.

A life-changing diagnosis

Lowe underwent surgery during high school to lengthen his Achilles’ tendons. A year-and-a-half later, after his first year at Iowa State, his recovery from the surgery still lagged far behind what he’d hoped for. He began to suspect something was wrong. He consulted with his doctors and was diagnosed with limb girdle muscular dystrophy. In addition to his musculature, the disease also affects his heart.

The disease causes him to tire easily, and his muscles get increasingly sore from everyday activity. While he takes medication to combat the effects on his heart, there are no therapies currently available to prevent muscle deterioration and it’s likely the disease will continue to hamper Lowe’s mobility.

“I have a progressive disease,” he said. “Every day can be a little bit more of a struggle than the last.”

The disease changed Lowe’s approach to college life. Today, he uses a cane  or a motorized bike to get around campus. Finding parking spots near his classes is of paramount importance, and he’s had to think strategically about taking the shortest route to his classrooms to conserve stamina. Luckily, the Armory, where he spent much of his last year at Iowa State, offers plenty of parking near its entrances, and the building’s open layout allows for easy navigation.

Lowe’s mobility challenges inspired his choice for a final project this semester. He designed a 3D-printed model of a three-wheeled platform that would allow wheelchair users to get around at higher speeds and to a wider variety of destinations. He calls the invention the Free Wing. The design incorporates a ramp that allows a wheelchair to travel up onto a platform that fits atop the three wheels. He envisions the device could travel up to 20 miles per hour, compared to the top speed of most electric wheelchairs, which is about 6 mph. It would be portable too. Users could fold it up and park it at a bike rack.

Lowe said designing the platform came with one of those “light bulb moments” that makes industrial design so exciting. Creating a platform that folds into a compact form requires multiple parts to fit together seamlessly. Lowe started with a model made from popsicle sticks and a sheet of paper to help him visualize a platform atop a wishbone frame. From there, he developed computer renderings and a prototype. To his surprise and delight, all the components worked together just as he’d hoped.

“When I first 3D-printed my prototype, I could see that it fits over the front fork, which I didn’t expect, but it worked almost flawlessly when I put all the elements together,” he said.

Following graduation, Lowe said he’d like to find a design job that allows him to work in a hybrid or remote arrangement so he can devote time to travel. After his sophomore year at Iowa State, he took some time off to explore the country in a camper van he customized with his parents. He hit numerous national parks from coast to coast, passing the winter in Arizona and New Mexico and watching the leaves change at Acadia National Park in Maine.

He said exploring the country and meeting people throughout his travels gave him a new perspective on life. It showed him that experiences are more important than possessions or wealth, he said. He’s also learned to accept his diagnosis as an essential part of his story, inviting him to view himself with a greater compassion.

“Once I got the diagnosis, I was able to lighten up on myself and become more myself instead of not liking some aspects about me,” Lowe said. “It is what makes me, me.”