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COMMUNITY
Your Stories
The Canadian PH community is made up of many exceptional individuals: patients, caregivers, healthcare providers, researchers, and supporters who individually and collectively refuse to give up in the face of the many challenges brought on by this disease. These are their stories.
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Click here if you are interested in sharing your story about your Life In Purple.
PHAware Podcasts
PhAware was founded by a group of pulmonary hypertension awareness activists. Comprised of patients, caregivers, and medical professionals, PHAware is dedicated to elevating their mission by making the public, news media, donors and investors #phaware of pulmonary hypertension.The podcast series "I'm aware that I'm rare" is devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world.
New Faces, Lasting Connections: My First PH Conference Experience
The 2024 Pulmonary Hypertension Patient Symposium in Calgary was my first rodeo, as it were. I started dating my partner Tarya in the...
Patient Voice: Angel's Story
Angel Ouellet One day when I was six years old, I saw a favourite teacher at the end of the corridor at school and ran to give them a...
Patient Voice: Rose's Story
Rose Jardim When I was 50 years old, I cut myself while shaving my legs. And then the cut just didn’t heal. It developed into a deep...
Patient Voice: Tarya's Story
Tarya Morel Looking back, I’ve had difficulties with shortness of breath for as long as I can remember, but it never really occurred to...
Traveling with PH: Angele's Family Adventures Across Canada - Blog 4/6
Blog 4/6 - Getting there Guillaume and I love road-tripping! Ever since we met in 2001, we have frequently hit the road in search of...
Traveling with PH: Angele's Family Adventures Across Canada - Blog 3/6
Blog 3/6 - Easter Seals When a family welcomes a child, many will say that "it takes a village"; I would say the same when someone...
Traveling with PH: Angele's Family Adventures Across Canada - Blog 2/6
Blog 2/6 - PLANNING Planning is key, as long ahead as possible. I started in December 2023 for a trip in June 2024, and worked on this...
Traveling with PH: Angele's Family Adventures Across Canada - Blog 1/6
Introduction: Blog 1/6 We are the Belliveau-Thibeault Family from Dieppe, New Brunswick. This year we received an opportunity to fulfill...
How Timely Diagnosis Changed My Life
I was a healthy and fit 59-year-old woman living in Winnipeg, MB, at the start of 2020. Then I started feeling like something was wrong....
Life's Twists and Turns: My Story of Living with PH for Over 40 Years
Hi, my name is Suzanne Martin Wagnell, and I’ve just turned 60 years old in January. My husband and I are both retired and living our...
Make-A-Wish trip to Disney World
Our daughter, Georgiana McAlpine, 10, was fortunate to receive a wish from Make-A-Wish Canada this past July! She was diagnosed with PAH...
Managing life with multiple rare diseases
Lupus is an autoimmune disease that causes inflammation of the body. The most common form of lupus is systemic lupus erythematous (SLE)....
Living with Scleroderma and Pulmonary Arterial Hypertension: A Journey of Rare Resilience
Scleroderma and Pulmonary Hypertension Comorbidities, the simultaneous presence of two or more medical conditions in a patient, present...
Recognizing Black History Month
As we celebrate Black History Month, I think of how far we’ve come and still have to go regarding race. Being a mixed-race child raised...
Third Time's a Charm: Finding My Footing at Canada’s Rare Disease Conference
I have had the privilege of attending multiple Canadian Organization for Rare Disorders (CORD) Conferences over the last few years. It is...
CTV News - Ottawa school teacher living with rare Pulmonary Arterial Hypertension
Click here to watch Jo-Anne Mainwood interview on CTV News Ottawa --------- Jo-Anne Mainwood has been living with Pulmonary Arterial...
Jane's Journey: Overcoming PAH and Scleroderma
I suffered from osteoarthritis for many years, or so I was told. I broke bones easily and had two knee replacements, one in 2013 and one...
Living with Hope: My PAH Journey and the Power of Perseverance
My Husband Ron and I married in 1997. I didn’t know then, but the shortness of breath and fatigue I had been feeling for the previous...
Surviving the Storm: My Journey with Pulmonary Hypertension and Transplantation
In July 2015, I came down with what I thought was a chest cold that never seemed to get better. I spent the next three months going to my...
Getting the Most of Each Day
I first started noticing symptoms approximately seven months after the birth of my second child in 1996. In April 1997, I was diagnosed...
A testament to the strength and resilience of the human spirit
In 2016, I was an active 32-year-old. My boyfriend and I were trying to have a baby, and pulmonary hypertension, a disease I had never...
Ready, Set, Let’s Go!
Having lived with PAH for over 12 years, I vowed never to let it control my life. Our family loves to travel, and I was not about to hold...
One Day, One Breath at a Time: Surviving Adversity
The first time I heard the words, "I think you have Scleroderma and Pulmonary Arterial Hypertension" was in January of 2012 was from my...
Adding My Voice as a Parent Caregiver to PHA Canada’s Board of Directors
I applied to join the PHA Canada Board of Directors in 2018 because I wanted to give back to the PH community and contribute towards...
Sonya: Twenty Years and Counting…
Twenty years ago, I first heard the words pulmonary hypertension. An emergency CT scan sent me to the hospital. I was in congestive heart...
Born from a Vision: Why I Joined the Other Founders to Start PHA Canada.
15 years. Wow! Has it been that long since the small group of us got together with a vision of starting a national organization in...
Patient Voice: Emily's story
Emily's story is featured by Patient Voice * “I was working as a litigator in Toronto when I was diagnosed with chronic thromboembolic...
My CTEPH Diagnosis
Greetings. My name is Stephen Winter, and I’m from Oakville, Ontario. I want to share my story about chronic thromboembolic pulmonary...
My Journey to Chronic Illness
My journey to chronic illness has been a long one. My official diagnosis came in 2007, but I’d had signs and symptoms for quite a long...
Jas' Life In Purple: 21 years since being diagnosed with PH
The 21st anniversary of my PH diagnosis came, and I had to pinch myself. I started thinking about all the things that happened on the...
Patient Voice: Esther's story
Esther's story is featured by Patient Voice * “Since I moved to Canada from Trinidad and Tobago, I’ve always been on the go — working,...
My PHighter is Graduating!
Being the mom of an ambitious, artistic dreamer has been a fun journey. From a very young age, Brinley always said, “mom, I want to...
Being a PH parent: Michael Mayville's story
My name is Michael Mayville, and I live in Toronto with my wife, Nicole. We are the proud parents of two children: Vance, our 8-year-old...
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