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Sara Newman
Sara Newman (L) has been a patient of UHN’s GoodHope Ehlers-Danlos Syndrome Clinic since 2018. Thanks to the mix of medical interventions and self-management strategies, she has been able to optimize her day-to-day-life. Here, she is pictured at the 5K Star Wars Rebel Run at Walt Disney World, which she completed along with her wife and daughter (R). (Photo: Courtesy Sara Newman)

Sara Newman remembers her first visit with Dr. Nimish Mittal as the day she received hope for the future.

It was more than two years ago when she sat down with Dr. Mittal, physiatrist and medical lead of UHN's GoodHope Ehlers-Danlos Syndrome Clinic, and Sara was feeling very weary.

"By the time I was referred to Dr. Mittal, I had cycled through so many medical professionals, and told my story so many times, that I had given up on finding any answers to explain what I was going through," she recalled recently.

After pushing through a lifetime of joint subluxations (partial dislocations) resulting from extreme flexibility; frequent fainting; Irritable Bowel Syndrome; and headaches, Sara was finally meeting a medical professional who was able to connect her complex medical symptoms.

Dr. Mittal also gave it a name – Ehlers-Danlos Syndrome (EDS) – and established a care plan that put her in control of her own well-being.

"After watching him perform my physical assessment, note subtleties nobody had before, and quickly identify the supports I needed, I knew I was finally in the right hands, and on the right path," Sara says.

Being in the care of a physiatrist in an acute hospital setting represents an under-utilized opportunity for patients.

As specialists of physical medicine and rehabilitation, physiatrists usually see patients toward the end of their care journey, to help strengthen their bodies after an illness or injury, and prescribe self-management strategies that optimize day-to-day living.

But UHN's EDS clinic – the only one of its kind in Canada – is breaking down the silos that exist between acute and rehabilitation medicine, to draw on the expertise of physiatrists earlier, and ensure patients get the right care at the right time.

It's a blueprint that is becoming increasingly critical, as patient complexities put more and more demand on the healthcare system.

Physiatrists are able to triage complex patient care

Think of physiatrists as the general practitioners of complex, multisystemic disorders.

"Physiatrists are well-positioned to triage patients and oversee the management of their conditions, because, in training for rehab medicine, we learn enough about a lot of different specialties," says Dr. Mittal.

Dr. Nimish Mittal
Being in the care of a physiatrist, such as Dr. Nimish Mittal, in an acute hospital setting represents an under-utilized opportunity for patients. (Photo: UHN)

EDS, for example, is a rare, connective tissue disorder commonly characterized by seemingly unrelated symptoms, including hyper-flexible joints that subluxate; easy bruising; and chronic joint pain.

At the EDS clinic, it's Dr. Mittal, along with a nurse practitioner, who assesses each prospective patient, pieces the puzzle of their symptoms together, and identifies who, within the clinic's multidisciplinary team or beyond, should be involved in the patient's circle of care. This may include specialists in the areas of pain, neurology, gastroenterology, cardiology, respiratory, psychology, exercise rehabilitation, and diet.

"Appointing a physiatrist as medical lead of the EDS clinic fills an important gap that we commonly see in acute settings," says Dr. Hance Clarke, Director, GoodHope Ehlers Danlos Clinic.

"Nimish's broad knowledge of complex conditions brings a holistic lens to an increasingly specialized environment, and promotes a safe and seamless patient journey."

The under-recognized benefit of self-management

While there is no cure for EDS, patient-led symptom management, in tandem with appropriate specialized care, is the most effective approach to long-term wellness.

For example, to address Sara's frequent fainting, Dr. Mittal referred her to a cardiologist, who implanted a pacemaker, and a cardiac rehab program, which promoted a safe recovery and specialized exercise regimen.

She also learned to increase her water and salt intake, how to "wake up" her legs before getting out of bed or changing positions, and was prescribed a level of Vitamin C that would help resolve bruising that just wouldn't heal.

"They sound like small things, but they make a big difference in my day-to-day life," says Sara.

He also referred her to a physiotherapist, for weight-bearing exercises that help build strength in the muscles around her joints, and suggested braces, for additional support.

"Dr. Mittal is always thinking about different ways to help me safely go about my life," says Sara, who recently acquired an adaptive bike, called an Alinker, through Variety Village, to help increase her mobility.

Dr. Mittal says until now "self-management has been underplayed and under-utilized"outside of a rehab setting.

"But it's the only model shown to be sustainable in a public healthcare system," he says.

Beyond evidence suggesting that this model reduces risk of future readmission to hospital, the benefits of early adoption include reduced time in hospital, and lower rates of death, disability, and need for long-term care.

A blueprint for tomorrow's care

Feedback from patients may be positive, but Dr. Mittal knows he has a long way to go in educating the healthcare community about the role of physiatrists.

"Our colleagues tend to relate to us in terms of physical therapy, and don't always see how our expertise can be applied outside a rehab setting," says Dr. Mittal.

"We need to let them know that physiatrists can serve as co-leads in any environment – from intensive care and trauma units, to orthopedics, chronic pain management and neurology."

It's a sentiment that reflects the World Health Organization's recommendation that rehabilitation services be integrated into and between primary, secondary, and tertiary levels of care.

But it also reflects UHN's strategic priority to inspire, invent and deliver tomorrow's care.

"Physiatrists can enhance the recovery of acute care patients by adding a focus to how their illness or injury affects their activities of daily living, and ensuring that those who need rehab gain access as soon as possible," says Dr. Mark Bayley, Physiatrist in Chief and Medical Program Director, Toronto Rehab.

"We're excited about working with our colleagues, to start problem-solving the physical, functional or cognitive issues that prevent patients from returning to a full life in the community."

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