Due to the sensitivity of this recovery story, the last names of "Christine" and her relatives have been withheld for privacy reasons.
After two years of chronic pain, Christine is finally living a normal life again, thanks to the work of numerous volunteers from the Edgewood Chemical Biological Center (ECBC), community volunteers and the support of Johns Hopkins Medicine.
A Canadian native, Christine is a 22 year-old who had been confined to the inside of her home due to her extreme sensitivity to temperatures, smells, air movement and touch. Temperatures outside a strict range of 88-93 degrees Fahrenheit – hotter or colder – were unbearable for her. The faintest of breezes caused severe pain. Her sense of smell was intensified; background scents or odors were interpreted as pungent and nauseating. Eating hurt and was a chore; in order to avoid the painful movement of her hair across her face and head, she shaved it.
Christine didn’t always have these exaggerated senses.
"She is borderline genius, an extremely intelligent individual who was eager to return to her normal way of life," said Mark Schlein, ECBC’s ADM Division Chief. "As the head of her household at such a young age, it was imperative that she get healthy."
Two years ago a head trauma injury caused the onset of Christine’s Complex Regional Pain Syndrome (CRPS), a condition which is described as constant or intense chronic pain that can develop after a minor injury or as a result of tissue damage during a surgical procedure. Most patients will report continuous, excruciating pain that exceeds the threshold for what is considered normal in comparison to the type of injury the patient has.
"Christine was more and more locked into her apartment due to her symptoms, and she needed to receive medical treatment," Schlein said. "But since the Canadian healthcare system doesn’t allow for house calls, she was stuck with a dilemma – she had to get out in order to receive necessary medical treatment."
In the spring of 2010, after reaching out to numerous medical facilities, science and engineering research centers and international labs, Christine found an organization that could help her. She requested assistance from V-LINC, a merged organization consisting of Volunteers for Medical Engineering (VME) and Learning Independence Through Computers (LINC). Focused on improving the independence and quality of life for individuals through innovative technology solutions and in-home training, V-LINC was able to provide the solutions and support that Christine would need to recover.
Through V-LINC, Christine was connected to the ECBC VME volunteers, where she received personalized assistance to develop a helmet and full-body suit that would provide the environment she needed to permit her to leave her living area for medical treatment and daily activities. She had done substantial research on possible design alternatives for the helmet and gave ECBC her own designs.
During the summer of 2010, a project team was formed to incorporate the existing VME volunteer team from ECBC headed by Schlein, representatives of The Johns Hopkins University Whiting School of Engineering headed by Dr. Andy Conn, V-LINC volunteer (retired from National Aeronautics and Space Administration) Stan Ollendorf and other individual V-LINC volunteers with relevant experience and expertise.
"Originally, Hopkins was to take the lead, and ECBC volunteers were going to serve as consultants," Schlein said. "But as the project progressed, the university was unable to maintain a lead role, and so we switched. Hopkins held a fundraiser, raised $8,000 to go towards the project and we moved forward to develop the helmet for Christine."
Using Christine’s concepts, ECBC volunteers began work to develop a portable solution incorporating: a helmet, which Christine dubbed "Gecko," a full-body suit, air heating and filtering and a power supply.
"It was a collaborative effort across the ECBC Engineering Directorate," Schlein said. "Greg Thompson’s Conceptual Modeling team, Rick Moore’s Rapid Technologies team, Jeff Hofmann’s Program Manager team, Dan Lumpkins shop team and Alex Pappas’ Protection Factor team were all a part of this effort."
In October, the project became critical when Christine suffered a recurrence of gastroparesis, which caused a loss of weight and threatened her overall health. As the international Calmar Pain Relief Therapy clinic notes, CRPS symptoms tend to worsen rather than get better over time.
In Christine’s case, the symptoms did worsen and were beginning to cause additional health problems.
"Our team immediately stopped focusing on the full-body suit and focused on perfecting the temperature system in the helmet. The helmet would permit her to travel to medical facilities to resolve this problem without exacerbating the CRPS," Schlein said.
The required travel would be more than just a quick drive to her local hospital, though. With the help and coordination of Conn, Christine was to receive evaluation/treatment at the Johns Hopkins Medical Institution (JHMI) in Baltimore.
In December, a prototype Rapid Response Helmet System (RRHS) was produced and delivered to Christine. In February, because commercial travel was not feasible for Christine, a three-member team consisting of Schlein, along with ADM’s Jason Adamek and a volunteer community physician, Dr. Ian Shantz, began a journey via RV to her hometown of Red Deer, picked her up and brought her to JHMI. All three road-trippers committed to the trip voluntarily, taking personal vacation time to travel. "She literally looked close to death when we got her," Schlein said. "She had lost considerable weight and was too weak to walk."
However, Christine hadn’t lost her sense of humor and creativity. She sarcastically christened the large RV as "Amentet," referencing the ancient Egyptian goddess who was the consort of Aken, ferryman of the dead.
"She kept us entertained for much of the ride to Baltimore," Schlein said.
At 7:45 p.m. EST on Saturday, February 5, 2011, the Amentet arrived at JHMI – a five-day, 5,500 miles round-trip finally completed. Its precious cargo was smoothly delivered into the caring arms of the doctors and staff at the hospital.
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After two months of intensive treatment at JHMI, Christine returned home to Red Deer – via airplane. "The doctors were able to determine that her gastroparesis and CRPS were related problems. One was causing the other, both problems were intensifying the severity of either problem," Schlein said.
When the doctors were able to block the primary source of pain, Christine’s holistic recovery was able to begin.
"Christine told me how impressed she was by the health care she’d received in the U.S., starting with Dr. Ian Shantz during the long ride from Red Deer to Baltimore, and then all of the JHMI staff, and especially her primary physician at Hopkins, Dr. Anastasia Rowland-Seymour," Schlein said.
Christine’s recovery was considered remarkable by the medical professionals. More so, her recovery was considered impossible without the numerous volunteers who designed, engineered, tested, nursed, treated and drove – all for the sake of working one miracle in the life of one young woman.
To find out more information about V-LINC, visit: http://www.v-linc.org/.
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