Soania Mathur Parkinson’s Disease Patient and Physician “For me it began at 27 years of age, a slight tremor in my right pinky finger, just as I was completing my residency in family practice and starting my career as a physician. At first I was more medically intrigued with experiencing a symptom that I had heard so many patients describe.

But then my concern grew as the tremor went from sporadic to continuous and that’s when I began to experience medicine from the patient’s perspective. The frustration at the lack of control I had over my own body, the desperation I felt when told of the diagnosis of Young Onset Parkinson’s Disease and the fear of the future. And through it all, relentlessly, the tremor progressed.

The effects transcended into my work, my social and family life. It made itself known from the moment I awoke until I fell asleep at night. All during a period of time that I felt I should have been in the prime of my life. A decade into my journey I began to realize that although I had no control over my diagnosis, I did have control over how I faced this challenge. This acceptance allowed me to [...] continue the story

Christine Jonas-Simpson I watched the tears drop from my nurses’ eyes as they gently took my blood and when they hugged me goodbye at the end of their shifts. My sweet curly red-haired son died and was born still after his cord knotted when I was 37 and a half weeks pregnant – he was nearly 6 pounds. My nurses and family remained by my side, the specialist who induced me followed up on his day off and my family doctors cried with me at home.

I was deeply moved and comforted by my caregivers’ expressions of grief. While I was living my worst nightmare I could not help but wonder what it was like for my healthcare colleagues to grieve and bear witness to our devastating loss. As a nurse I experienced grief of my own patients as well as identified with their families’ losses – these moments transformed me.

When my son died in 2001, I could not find research on nurses’ experiences of grieving when a baby dies and how this changed them. Healthcare professional grief was and continues to be hidden and not often discussed. Given I was a nurse and a researcher, I decided to invite my colleagues [...] continue the story

Wendy Preskow, NIED Founder, President & Chief Advocate As a parent, whose 27 year old daughter has struggled with Anorexia and Bulimia for over 12 years, Wendy is the passionate voice and driving force behind the National Initiative for Eating Disorders (NIED). Having lived with a sufferer and experienced the devastating effect Eating Disorders have on families and extended family and friends, Wendy reached the point of no return in late 2011. She could no longer sit back knowing her daughter was falling through the cracks of health care system that had failed her family and so many others in the same predicament.

Together with a core team of passionate advocates Wendy formed NIED in February 2012 to drive Eating Disorders awareness, understanding and action.

The National Initiative for Eating Disorders (NIED) is a not-for-profit coalition of dedicated health care professionals, counsellors and parents with children suffering from Eating Disorders.  Since we formed NIED in February 2012, we have become a respected and powerful voice, promoting Eating Disorders education and awareness to create positive change for a seriously underfunded, under-represented and misunderstood brain disease.

Did you know Eating Disorders have the highest mortality rate of ANY mental disease?

We collaborate with community groups, doctors, nutritionists, [...] continue the story

Chloe Vance Chloe’s diagnosis with Type 1 diabetes 13 years ago ignited a passion for adventure. In threatening to take away her freedom, diabetes inspired her to do more, see more and be more. She’s guided expeditions by canoe to the Arctic Ocean, traversed the North by dog sled, circumnavigated New Zealand by bicycle, run half marathons, completed adventure races, ski toured 400km north of the Arctic Circle in northern Norway and backpacked around the world.

In the video  below, Chloe Vance, founder and executive director of Connected in Motion, shares a turning point in her life, when she went from unengaged to engaged patient, to patient activist and realized the power of community.

Follow the exploits of Chloe and the Connected In Motion team online http://www.connectedinmotion.ca/ , on Facebook and Twitter @ConnectInMotion

See the stories of each of the XX in Health Week healthcare transformers: