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Updated by shirley williams on Feb 01, 2018
Headline for ePatients and eCaregivers
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ePatients and eCaregivers

Anne Marie Cerato

4-Year Lung Cancer Survivor

Patient Advocate and Speaker

I am living with stage 4 Lung Cancer. A little over a year ago, I was certain that my life would be cut short and I doubted I’d see my 35th birthday. Thanks to a targeted treatment I’m looking past 40, my condition although incurable is now manageable and chronic, not terminal.

One of the most challenging parts of this journey has been the isolation I felt, during and after treatment, both as a Lung Cancer patient but also as a Young Adult. Even living in a world-class city like Toronto, I found it incredibly difficult to find the resources and outlets I needed as a Young Adult living with Lung Cancer. After having experienced the stigma and isolation of having this condition I decided I would do something to change things for the better.

DSC02601I began These Are My Scars to provide other young adults with a place and the tools to see their own scars in a new light. Through this new perspective, we hope that individuals are able to heal from the deeper emotional scars emanating from the cancer experience. This personal project has led me into Patient Advocacy and Public Speaking. It is through speaking for organizations such as Pfizer, Bohringer-Ingelheim and the Lung Association that I am able to share my story and inspire Patients, Medical Professionals and others to have hope and to advocate for themselves.

More recently I have had the privilege of being elected to the Board of Lung Cancer Canada, the nation’s primary non-profit resource for lung cancer education, patient support, research and advocacy. By sitting on the Advocacy Committee, I am able to use my experiences to help evoke change to the system and influence how patients are treated in the future.

Using tattoo as a medium of self-expression Anne Marie shares her personal, emotional journey on Patient Commando.

Annette McKinnon

After enduring progressive symptoms for two years, when I was finally diagnosed with RA at 32 it was a life changing event. It led me to build a rewarding career in market research over the past 25 years. For the first few years of dealing with the RA I felt alone: isolated and in the dark.

Once I joined the online world I found communities and support to be plentiful. I also discovered that I liked to share my experiences with others in ways that I hoped would be helpful. That motivated me to become active — both online and in real life — talking about support, advocacy and sources of information.

Now I share my experiences through my blog “Your Gold Watch – Rheutired“. It’s about being a patient and having a chronic disease in a general sense that could apply to almost any ailment.

I hope that my efforts will help patients to deal with challenges they face in healthcare, and enable them to become self-managers of their health issues and active participants in bringing change.

Here are some of the ways I have learned about being an active patient.

I’m a volunteer member of Patient Partners in Arthritis. This group provides trained patient volunteers who facilitate an increase in the understanding of all aspects of arthritis. This is accomplished through small group sessions led by a trained patient(s) that includes not only a technique for a musculoskeletal (bone and joint) examination but also real life narrative of experiences of living with the disease.

As a member of Board of Directors for The Sjogren’s Society of Canada I try to help to raise awareness of Sjogren’s Syndrome which is a disease that not enough people have heard of. I set up the Twitter account @SjogrensCA and try to Tweet relevant information at least once a day.

I volunteer as a model patient for The Arthritis Society.

As a Health Mentor I meet with students in various health care professions for the Centre For Interprofessional Education, University of Toronto. I’ve done this three of the past four years and think that this interdisciplinary course is part of the future.

I was trained as a Peer Mentor for Dr Mary Bell’s ongoing study called ”Peer to Peer Mentoring For Individuals With Early Inflammatory Arthritis“ I expected to be sharing information with others who had a new diagnosis of inflammatory arthritis. I did not count on learning so much myself.

I’ve been the moderator of a Yahoo RA group called RA-Factor for the past 5 years and a member for 5 years before that. There are so many useful and friendly support groups to help with almost any problem.

Also during the week I take time to be an active participant in several health care social media tweet chats. It’s a great way to learn more and meet and connect with people.

The movement to empower patients to work with their doctors and the health care system and to gain easy access to health data is gathering momentum. In an age of increasing costs, where a great deal of money is used by patients with chronic disease I would like to offer input and advice on self management of chronic conditions and help advance patient centered health care and the personal data revolution.

Brett Adler

Brett's passion for health began after developing an extremely rare auto-immune disorder that went undiagnosed and untreated for years. He longed to connect with other people going through the same experience and that's when he envisioned Feelalike. Brett graduated magna cum laude with a BS in computer science from Brigham Young University. He has 7 years of technical sales experience and was formerly a software developer for TurboTax® online at Intuit.

Christine Janus

Christine Janus has been the Executive Director of the Canadian Skin Patient Alliance (CSPA) since 2007. A skin patient herself, she has grown the ‘for patients, by patients’ organization to a nationwide support, education and advocacy organization serving affiliated patient organizations and the millions of Canadians living with skin conditions, diseases and traumas. Christine is an active patient advocate and works on a number of committees with the Best Medicines Coalition, has represented skin cancer patients on the Canadian Cancer Action Network and is currently involved in 2013 with the formation of a federal patient voice initiative. Christine represents skin patients in Canada here at home and globally, seeking to always pass on the message that skin disease is more than skin deep.

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Under Christine’s leadership the CSPA has won 3 awards –for its excellent website, for its widely read national magazine ” Canadian Skin” (à propeau in French), and this last year for a very thorough analysis of access issues faced by dermatology patients in Canada called “ Skin Deep : A Report Card on Access to Dermatological Care and Treatment in Canada”. Under her watch the CSPA also offered skin, hair and nail patients their very own conference in 2012. Called SKIN MATTERS, it brought relief and hope to the many patients and family members who attended. In 2013, Christine helped the CSPA launch a subsidiary organization specifically to serve psoriasis patients, called the Canadian Association of Psoriasis Patients (CAPP).

Prior to her life in the non-profit patient support world, Christine was a marketing consultant with experience in the University, Training and Health care sectors in both Canada and the US. A former banker with global responsibility for marketing training worldwide, she has built a career that based on keenly understanding the needs and perspectives of the people she serves and is known to be an out-of-the-box thinker always on the lookout for win- win –win projects. She holds an MBA, and a BA/B.Ed, lives in Ottawa and is the fiercely proud mother of 3 fine young men.

Dee Christensen

Dee Christensen is a writer, social advocate and the owner of Canada’s leading addiction magazine. This former street junkie turned entrepreneur used her life experiences and an academic background in Criminology and Social Work to found Recovery Wire Magazine. This common interest publication has become a vehicle for uniting the broader addiction community, and a medium to reach people who might not be ready to get help yet. As Editor in Chief, Dee is passionate about joining the fight to educate people about addiction, and end the cycle of isolation and recidivism. This grass roots magazine, written by people impacted by addiction personally, has become a major resource for addiction professionals and individual subscribers around the globe: from Canada to the United States, Australia, Italy, the United Kingdom and even China.

Derek Forgie of MTV Canada writes, “One would be hard-pressed to find a hipper, slicker, unapologetically honest approach to the important issue of recovery.”

RW_ReBrand01Cover, Issue 2 Recovery Wire

Dee credits her success to the everyday, hard working heroes in the mental health field that she met along the way. For every person who steered her in the right direction and cheered her on during her voyage back to life, she works tirelessly to pay it forward to those still in need of a second chance.

Diana Chingos

Ms. Chingos, a survivor of early onset breast cancer, led the Cancer Survivorship Advisory Council at the University of Southern California from 1999 until 2013, representing patients on the Cancer Center’s Executive Committee. She serves as a Patient Advocate in Research on numerous breast cancer research studies, on the NCI’s Investigational Drugs and Patient Advocate Steering Committees and as an advisor to the NCI/NIEHS Breast Cancer Environmental Research Program. She also is a current IRB member. She earned a Masters Degree in Health Administration in 2010 and since 2012 has reviewed grants for PCORI and mentored new patient and stakeholder reviewers. Patient-centeredness in research, she says, “means the empowerment of patients and validated strategies and tools for the healthcare practitioners and systems caring for them.”

Emily Bradley

A 21 year old student and ePatient advocate working to help others navigate through life with chronic pain, chronic disease, and disability. Sharing resources, advice, helping others find a voice and become empowered patient advocates. Raising awareness for Autoimmune Arthritis and Autoinflamatory diseases.
Chronic Curve serves to help others live the best possible life they can with a debilitating disease by sharing resources.

e-Patient Dave

Dave deBronkart, known on the internet as e-Patient Dave, is the author of the highly rated Let Patients Help: A Patient Engagement Handbook. After beating stage IV kidney cancer in 2007 he became a blogger, health policy advisor and international keynote speaker. An accomplished speaker in his professional life before cancer, he is today the best-known spokesman for the patient engagement movement, attending over 200 conferences and policy meetings internationally in the past two years, including testifying in Washington for patient access to the medical record under Meaningful Use.

A co-founder and board member of the Society for Participatory Medicine, e-Patient Dave has appeared in Time, U.S. News, USA Today, Wired, MIT Technology Review, and the HealthLeaders cover story “Patient of the Future,” and his writings have been published in the British Medical Journal, the Society for General Internal Medicine Forum, and the conference journal of the American Society for Clinical Oncology. In 2009 HealthLeaders named him and his doctor to their annual list of “20 People Who Make Healthcare Better.”

Dave’s TED Talk Let Patients Help has gone viral, in the top half of the most viewed TED Talks of all time, approaching a half million views; volunteers have added subtitles in 26 languages, indicating the global appeal of his message, and in 2012 the National Library of Medicine announced that it’s capturing his blog in its History of Medicine Division.

Erin Moore [66 roses]

Erin Moore is the mother of 4 children, ages 5 and under. Her 3 year old son, Drew, has cystic fibrosis. Erin is involved with the Cystic Fibrosis Foundation as both a fundraiser and as their state advocacy Chair, sharing the policy agenda of the foundation with key decision makers in government to let them know how the decisions that they make can positively or negatively impact the CF community. She is the chair of the mission committee for the Cystic Fibrosis Foundation, acting as the face and voice of the CF Foundation mission by representing local families and care givers from the Cincinnati/Dayton area and supporting the chapter’s fundraising and advocacy needs by sharing her story. Erin also chairs the parent quality improvement team for the pulmonary unit at Cincinnati Children's Hospital and works as a parent TOUCH volunteer in the NICU. She meets with families currently in the NICU as someone who formerly had a child there to share a message of support and hope.
" 65 Roses " is what some children with cystic fibrosis call their disease because the words are much easier for them to pronounce. This blog, 66 Roses, is dedicated to finding the cure. Cystic fibrosis is a life shortening genetic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide).

Holly Bridges

Three years ago, I was diagnosed with uterine fibroids (non-cancerous tumours facing 1 in 4 women and are the leading cause of hysterectomy in Canada) and told that hysterectomy was my only option.

Today, I am pain-free and period-free, with all my reproductive organs intact, thanks to a gynecologist I found through

my own research, who performed two of the most high tech, state-of-the-art procedures available in the world today – a hysteroscopic myomectomy and hysteroscopic endometrial ablation. Women should not have to rely on their own detective skills to get the best possible outcomes for the medical conditions that threaten their well-being.

So what?

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Every year in North America, some 700,000 women (650,000 American and 50,000 Canadian) undergo hysterectomy and of those, 60 and 80 per cent of those hysterectomies are medically unnecessary, performed for benign conditions such as uterine fibroids, cysts, polyps, adenomyosis and the most crippling of all benign conditions, endometriosis.

The reason I am so passionate about helping women become more aware of minimally invasive medical and surgical options is they present outcomes for women that are:

Less painful
Less risky
Less invasive
Less expensive
I wrote The UnHysterectomy and started my online community as a resource for women to learn, connect and share about their own journeys with heavy menstrual bleeding, something we simply do not do in our society as well as learn about the full range of treatment options.

Jamia Crockett

In 2012, I became a patient guide for Novartis to share my experiences as a patient living and managing Multiple Sclerosis. As patient guide, I have completed over a dozen live speaking engagements, from Pennsylvania to North Carolina. Becoming an ePatient was crucial; I am creating a medium to have meaningful interactions with patients, caregivers, and the general public.

Jenn Sprung

I feel like I was able to provide better health care for my dog than for my child. It should not feel this way!" January, 2011- words spoken to a very kind Critical Care pediatrician that was willing to listen.

Marie Ennis-O'Connor

Marie Ennis-O’Connor is a PR consultant with a passionate interest in healthcare social media. She is a board member and social media manager for Europa Donna Ireland – The Irish Breast Cancer Campaign, an advocacy group that is one of 46 EUROPA DONNA member countries across Europe. Marie is a regular contributor to Health Works Collective, partner of Doctors 2.0 & You. She is a featured blogger on Berci Mesko’s Webicina, also a partner of Doctors 2.0 & You, and has been awarded a top blogger accolade by Empowered Doctor.com and most inspiring writer by WegoHealth. Most recently she won the best health and wellness award in the Irish Blog Awards for her blog Journeying Beyond Breast Cancer. Marie is co-founder of #BCCEU, Europe’s first breast cancer social media chat, and a committee member of Health 2.0 Dublin.

Megan Oates

Megan Oates Diagnosed with cancer at 17, author and budding philanthropist Megan Alexandria Oates decided to pen her own memoir 'Would You Like Your Cancer?' Provocative and honest, she crafted a must-read story that is entertaining in its boldness and captivating in its intimacy. She shares the innermost details [...]

Michael Seres - Bowel Surgery Recovery and Inflammatory Bowel Disease

I’m 43yrs old, born in London and married with 3 teenage kids. I was diagnosed aged 12years old with the incurable bowel illness known as Crohn’s Disease and had my first resection at the age of 15. Over the next few years I underwent over 20 major operations before being left with around 60cm of small bowel left. At that stage I was unable to eat or drink without being sick and I developed intestinal failure. I was put on intravenous feeding known as Total Parenteral Nutrition (TPN) and after several years being intravenously fed I became, in late 2011, the 11th person to undergo a small bowel transplant at The Churchill Hospital, Oxford, UK and life changed forever.

Prior to transplant I started a blog initially to keep friends and family updated on my progress but it took off. One year later over 52,000 people have read my blog, my transplant team use it to keep tabs on me and understand the journey through the eyes of a patient and advised their medical students to follow suit. It’s become the official global patient journey of the Intestinal Transplant Association. My blog gathered momentum becoming "syndicated" in patient sites and forums globally. The reaction showed me that connecting patients with other patients was having a huge impact on how they approached their care, complications and successes.

The blog led me in to social media. * Twitter, Facebook , You Tube, Pinterest and Linked In strategies grew. My sole aim was to utilise my experiences to help others. More patients shared their experiences providing others with the confidence and knowledge to go back to talk to their medical teams about their care options and new therapies if complications occurred. My biggest gamble was putting a picture of my ostomy on Pinterest and tweeting it. The purpose was to break down barriers and help patients feel that they could talk freely about any issue.

A daily Vlog on You Tube encapsulating my week in as a bowel transplant patient was the next step. I talked from a patient’s perspective about coping with a hickman or picc line, what happens when your stoma leaks at 3am and enteral feeding aimed at making patients not feel so alone and that they can actively participate in their own care.

I now use all social media channels to mentor patients globally and develop on line communities such as Bowel disease One Global Family which now has over 830 members. I have started a fortnighly tweetchat (#IBDCHAT) and used my patient experiences to become involved in national campaigns to change the patient experiences in hospitals. I am the patient spokesperson for the Campaign for Better Food in the NHS & helped launch a private members bill in Parliament. I am also a Patient Ambassador focusing on social media for The Patient Association.

In September 2012 I became an E-Patient Scholar at Stanford University’s Medicine X and I am also now the UK Patient Ambassador for the 2013 Doctors 2.0 & You conference. I write patient focused social media strategies for a number of hospital trusts including the Oxford Transplant Foundation where I am on the Executive Committee.

Regina Holliday

Regina Holliday is an activist, artist, speaker and author. You might see her at a health conference painting the content she hears from the patient view. She is part the movement known as participatory medicine. She and others in this movement believe that the patient is a partner with their provider and both should work together as a team. Regina, like her friend Dave deBronkart, is also an e-patient. She utilizes the tools of technology and social media to better understand the patient condition and the landscape of medicine.

Sam Gordon

Sam Gordon built a career as a Financial Advisor before retiring three years ago; he now serves on the board of the Stevenson House and the Villages Program of Avenidas. He also finds time for travel and photography, among other interests. Sam and his wife of 30 years have a beautiful family, including 7 children and 4 grandchildren. A long term patient of the Palo Alto Medical Foundation, Sam became particularly interested in the physician-patient interface since being diagnosed with inoperable pancreatic cancer in August of 2012. He is pleased to contribute to making doctor-patient relationships more effective.

Sara Fin

Saraƒin is a Toronto area cartoonist, who writes and draws a webcomic series called ‘Asylum Squad’.

Her first graphic novel, ‘Asylum Squad Side Story: The Psychosis Diaries’, was birthed during a year long psychiatric incarceration.

Saraƒin’s work challenges the common misconceptions about psychotic/spiritual experiences, and breaks down stereotypes of what it means to be “schizophrenic”. She has presented her work at the University of Toronto as part of the ‘Comics and Medicine’ conference in 2012, has been mentioned in various periodicals, including The Globe and Mail and Quill and Quire, and is an active voice in the Toronto Mad Pride movement. Saraƒin rejects her diagnosis of schizoaffective disorder, preferring to just say that she has lived with psychosis, and she believes that her true condition is a spiritual problem. She has just released her second graphic novel, ‘Asylum Squad: Monster Hospital’, and is working on her next book.

Sarah Kucharski

FMD Chat Board of Directors Sarah E. Kucharski, Chairman/CEO An intimal fibromuscular dysplasia patient, Kucharski founded FMD Chat shortly after her diagnosis with the disease at age 31. She envisioned an international network of peer-to-peer connections for patients, caregivers and healthcare providers with the aim to improve the quality of life for those affected by FMD within this lifetime.

Sara Nicastro

Sara Nicastro was diagnosed with type 1 diabetes in February of 2003, the week before her birthday and during her senior year of college.
She found the diabetes online community a few years after diagnosis and as a result, has become a passionate diabetes advocate. She currently writes at MomentsofWonderful.com, serves as the Social Media Committee Chair on the Advisory Board of the Diabetes Community Advocacy Foundation, is a member of the Advisory Board for the You Can Do This Project, and co-founded and runs the monthly Best of the 'Betes Blogs project for the diabetes online community. She is also a Volunteer Manager for her local JDRF chapter.
Over the past ten years she has worked in many different areas of higher education and currently works full time as a human resources manager. She lives in southern Nevada.

Sara Riggare

Proud mother, engineer, PhD student on patient empowerment by IT, optimistic realist with Parkinson's. Not patient but im-patient.
Sara Riggare is an engineer and an unusually engaged patient. She experienced the first symptoms of Parkinson's disease around 1984, when she was in her early teens and has been working with a number of patient organizations during the last decade. In 2010 Sara decided to bring her engineering skills and personal interest in technology and social media into the healthcare field and therefore entered the master program in Health Informatics at Karolinska Institutet in Stockholm. She is currently a doctoral student at the Medical Management Center, and the focus for her research is patient engagement on all levels of the healthcare system and self tracking as a tool for personal health improvements in chronic disease.

Sonia 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 move forward.”

Soania Mathur is a family physician who had to resign her practice as a result of her Young Onset Parkinson’s Disease a full twelve years after her diagnosis at age 27. Now she is a dedicated speaker, writer, educator and Parkinson’s advocate. She speaks passionately about the challenges of adjusting physically and emotionally and the coping strategies available to patients, both through medical and lifestyle tactics to manage the changes.Soania is an active speaker with the Parkinson’s Society of Canada at patient-directed conferences and also serves as a resource for education projects. She works with The Michael J. Fox Foundation for Parkinson’s Research and serves on their Patient Council. She is a member of The Brian Grant Foundation Advisory Board that helps to create educational programming.

She is the founder of Designing A Cure Inc. which was initially created to raise funds directed towards research and awareness of Parkinson’s Disease and now serves as a platform to educate and inspire those living with this disease to take charge of their lives, to live well with Parkinson’s.

Dr. Mathur has a special interest in helping educate the youngest affected by the stress of this chronic disease. To help facilitate dialogue between children and their loved ones, she has authored two books: “My Shaky Grandpa” and “Shaky Hands, Loving Hands – A Children’s Guide To Parkinson’s Disease” (awaiting publication).

Vicki Whiting

Professor and Award Winning Author

Dr. Vicki R. Whiting, professor and award winning author, brings over twenty-five years of business and leadership experience to classrooms and executives throughout the United States. As a doctoral student at the University of Southern California, Vicki was honored as a Sample Fellow. Vicki has focused her teaching, research, and consulting experience in the area of organizational leadership, most specifically on personal and organizational leadership development through mentor relationships, leveraging strengths, and developing effective organizational interactions. Publications in numerous academic journals compliment her recent award winning health care advocacy book, “In Pain We Trust.” Vicki has presented her ideas on collaboration, coordination and commitment through listening and advocacy to organizations including the Intermountain Healthcare Board of Trustees, the American Hospital Association, and at the Utah Nurses Association. Prior to her academic career, Vicki was Director of Technical Services for Digital Systems in Seattle, Washington.

Wendy Preskow

endy 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.

Zal Press

Founder, Patient Commando Productions.

Zal Press knows chronic illness, having lived for over 30 years with Crohn’s Disease. He understands what it’s like to endure chronic illness in a healthcare system that is not always ideal. Zal founded Patient Commando Productions, to be the leading source of authentic patient stories, and to create Patient experience programming that enriches our understanding of the lived illness experience. From skilled public speakers, to award winning live stage events and storytelling clinics, Patient Commando’s website www.patientcommando.com and programs empower collaboration between patients, caregivers and health care professionals in the delivery of care.

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