Patients with complex illnesses are living longer today than ever before as a result of advances in medical research and the availability of healthcare services. The disability-adjusted life year, or DALY, which measures overall disease burden by calculating the sum of years of life lost (YLL) when people die prematurely and the years lived with disability (YLD) confirms this increase.
With people living with disabilities longer than ever before, the question today is not only how to lengthen life but how to ensure the quality of these additional years.
Quality and quantity
While some of the most innovative breakthroughs in medicine this year have focused on prevention or cure – some as shocking as using re-engineered polio to treat cancer or using eye drops to melt away cataracts and prevent blindness – technologies to improve quality of life for patients with complex long-term needs have also developed rapidly. Pediatric patients who require long-term care can nowl receive an education and attend a virtual classroom with classmates their own age by using the VGo, a telepresence robot that enables users to replicate themselves in a distant location and gives them the freedom to move around as if they were physically there.
For patients suffering from locked-in syndrome, a condition where the body and most of the facial muscles are paralyzed but the brain remains intact, allowing for certain eye movements, the technology Eye Gaze allows them to communicate and interact with the world. The device uses sensors to track eye movement, which is a form of rehabilitation exercise, while simultaneously having the user look at control keys or cells displayed on the screen to generate speech either by typing a message or selecting pre-programmed phrases. This device can transform a person, simply because it encourages the individual to have a voice, express opinions and preferences, and communicate on a global level if they desire. What is to stop them, with this device at hand, to become an author of a world-wide best-selling novel?
Reintegrating into society
What does it mean to be human? There are a myriad of ways to respond to the question, but one of the many definitions is making a contribution, big or small, to society. Or, as Bill Gates put it, “being human means thinking about our place in the universe”. By combining both medical and technological advances, there are fewer barriers for patients with complex illnesses wanting to pursue their passions and achieve their goals. At Amana Healthcare, a specialized provider of long-term acute care, post-acute rehabilitation and home transition services in the United Arab Emirates, 35-year-old Badr Al Ali, a patient with locked-in syndrome, has reignited his hopes and sense of purpose as he collaborated with a renowned calligraphy artist to create works of art. Using the Eye Gaze technology, Badr was able to communicate which colours he preferred to use, placement, theme, and the spelling of the names of his two daughters to be painted in calligraphy, which the artist delivered as per the brief. The amount of emotion from both sides and combined efforts was clearly portrayed through the work of arts created, which are now being showcased in the top galleries in the Emirates for thousands of viewers to admire.
Following the same concept, 20-year-old Asma Al Mansouri, who is living with muscular dystrophy at Amana Healthcare, has partnered with a renowned Emirati fashion designer, Fatma Al Mulla, to create head-to-toe collections which are being showcased at the leading fashion shows in Dubai and Abu Dhabi. Asma’s Instagram followers are growing by the minute, where she posts inspirational quotes as well as her favourite fashion designs. She wakes up in the mornings excited about engaging the world and pursuing her many projects.
Contributing to a good cause
There is a double benefit to linking patients living with complex disorders to artists, designers, musicians and other creative people. The experience is just as impactful for the artist as it is for the patient, and a closer bond is created within society as each project flourishes. The University of Florida even uses art as a form of “healing” for patients living with severe illnesses through their Center for Arts in Medicine, using forms of art, music, and even dance when possible. What better way to contribute to society than to be able to help a patient express themselves through a creative outlet?
Author: Dr. Peyvand Khaleghian – Director and co-Founder of Amana Healthcare