Sjaan Quirijns

Source: Project MARCH

A hot and sunny morning in early August, Sjaan Quirijns has just started the weekly training with an exoskeleton specifically fitted to her body size. She is standing right before an obstacle, namely a set of stairs. Looking upwards, with eyes that show focus, determination, and concentration, she is preparing to activate the exoskeleton. “Walking in 3, 2, 1”, is how she counts down. With an input device on her right crutch, Sjaan is providing the signal to her ‘robotic harness’ to start moving. The right foot is making the first step, landing firmly on the first step. The other follows, while Sjaan strongly pulls on the handrail attached to the obstacle. A couple of steps later, and she has made it to the top, full of enthusiasm and excitement shared by the people surrounding her. The exoskeleton has proven its worth!

For the third year in a row, Sjaan has been the pilot for Project MARCH. As a woman full of ambition and motivation, she does not go out of her way for a new challenge. Besides, she has always been the sportive type, being involved in activities ranging from volleyball and tennis to skydiving and survival runs. After her sports accident, now about 20 years ago, she remembers not feeling anything in her legs and instinctively knew that something was seriously wrong. At the hospital, she was told to have paraplegia, above the waist…

Not someone to give up easily, Sjaan started to look for possibilities instead of focussing on the negative side effects of her condition. “Actually, I have a rather positive mindset by nature. Every chance I see, I will receive with open arms. After the initial conversations with doctors and psychologists, I realized that there were so many things that I was actually still able to do. I decided to make something out of this new situation.” And that is exactly what she did. A new world of sports opened up for her, and Sjaan turned out to be more than successful in multiple fields, quickly reaching top sport level! Having said that, she climbed the Alpe d’Huez already twice with her handbike. Once even completing the Kautertaler Gletscherstraße climb in the same week. The latter is a 20 kilometer long Handbikebattle that has its finish line at a height of 2150 meters, with steep slopes along the way. If that was not impressive enough, she also plunged into adapted rowing. She even participated in the world championships of 2014! Thereby, Sjaan became Dutch Champion indoor rowing, underlining her sportive achievements!

Besides a newfound love of adapted sports, Sjaan continued her rehabilitation with one important goal: “I wanted to be as independent as fast as possible”. Whereas doctors were constantly updating her about the latest developments in the field of paraplegia recovery, Sjaan decided not to sit around and wait for these solutions to come to the clinic. “They use it to give you sparks of hope, maybe in fifteen years there will be a cure for paraplegia.” Sjaan wanted to immediately regain her life, and now, 20 years later, there is still no definitive remedy for paraplegia.

In 2017, Sjaan had a friend with paraplegia who participated in a research program that involved walking in an exoskeleton at the Sint Maartens Clinic. At the time, the clinic was still looking for more research candidates, and, inspired by the stories she had heard, Sjaan decided to make the next move. She fitted the requirements and soon enough she could be spotted in the clinic three times a week where she would be for her exoskeleton training.

When asked about her feelings regarding what it was like to stand upright again, Sjaan answered “Honestly, I had been doing the same thing at home, because I have a special standing table. The walking is what makes it really special. And with an exoskeleton, you can do so much more than just walk, such as descending and ascending stairs. That provides an extra kick. Also, it is better for my body. I immediately noticed that from my buttocks: the skin feels better. And besides that, my lungs have more freedom to expand. On the other side, it is also putting a lot of pressure on my shoulders and back, as it is heavy to operate the device. That is why I want to remain strong and continue to cycle as much as I possibly can!”

Despite the clear positive (medical) effects of walking with an exoskeleton, Sjaan is very clear about not wanting to have a suit like this for herself at home. “I would not want to have one, even not if it was provided for free instead of having to pay the full sum of 90.000 euros. At my home, it would only be standing there catching dust. An exoskeleton has its limitations. For example, you need help to get into and out of the suit. In addition, you are always holding crutches in both hands, which you need both to keep balance and to operate the device. How am I supposed to get my coffee from the kitchen and carry it with me? Who is going to carry my groceries home? And how does it work when I have to make use of the bathroom while at work? No, a wheelchair is still a lot more convenient for these activities. That is why I prefer an exoskeleton to be owned and used by a clinic, where the expertise is present as well. As such more people are given the opportunity to train with the suit.”

Sjaan wants to contribute to the development of an improved exoskeleton, which is one of her main reasons to have joined Project MARCH. The exoskeleton they developed is specifically tailored to her sizes and in a process called co-creation, Sjaan is actively involved in providing feedback about the design and user-friendliness of the suit. In her daily life, Sjaan is also working full-time at the ‘Hogeschool Utrecht’ as a senior advisor regarding educational logistics. Her involvement in Project MARCH, including all of the needed training time, is all on top of her normal daily activities and often takes up her free time on the weekends or evenings. However, she always finds the time and is often the last to cancel any training. She likes the fact that it is a student team and that there is also a competition to work towards. “In the short term, our goal is to finish the set of obstacles in the competition”, Sjaan explained. “In the long term, we strive to make the device such that people with paraplegia can use it in their daily life”.

However, that is not where we are yet. “We are still in the prototyping phase and thus the exoskeleton is not yet very suitable for use at home. On top of that, exoskeletons are not covered by insurance companies, which would make it very expensive to own one.” Every year the exoskeleton is improved slightly, but there is definitely room for improvement regarding usability. At the moment, the device is heavy and it still makes you dependent. Going out in an exoskeleton requires a lot of time and is exhausting as well, especially as it is not yet possible to combine exoskeleton use with wheelchair use.

If asked whether Sjaan would ever want to own her personal exoskeleton she answers honestly: “Only if I can easily bring it along and if I can use it independently. But before we will reach that point, a lot more research and development have to be done. Actually, I hope that doctors and researchers will succeed in finding a cure for paraplegia. That would help a lot more patients, even the people who are not strong enough or do not fit the requirements of walking in an exoskeleton!”

Watch the next video to see how Sjaan descends the stairs in the Project March exoskeleton!