Patient Voice

You may remember our friend Jeremy Bray from a recent Patient Voice story outlining the lived experience of three Canadian adults living with #SMA who can't access potentially disease-modifying therapies due to where they live. We were pleased to see Jeremy's story picked up by CBC Manitoba.

Research has produced several promising therapies to treat pulmonary arterial hypertension, or PAH. However, as is often the case, the existence of a therapy doesn’t mean that it’s accessible to all — or even some — patients. Thanks to support from Merck Canada, we had the opportunity to speak with three Pulmonary Hypertension Association of Canada community members — Tarya, Angel, and Rose — to learn about the precarious nature of #PAH and to advocate for prompt access to innovative #raredisease treatments.

"Her own journey through #cancer and the healthcare system has raised a troubling question: how often do Indigenous patients receive sub-par care, particularly when they're too afraid or unable to speak up?"

“Cancer patients don’t have time to wait" - Barry D. Stein Excerpt: Long waits for #cancer drug approvals in Canada mean some patients die before they can try treatments that might have helped them, say oncologists and patient groups who are calling for better access to oncology drugs.

“When I was diagnosed with ankylosing spondylitis at 22, I was overwhelmed. Before the pain came, I’d been fit and healthy, with an active social life and a tough job in the restaurant industry. I was used to being on my feet all the time, go go go. It had never occurred to me that a chronic illness like this was even a possibility. I almost immediately isolated myself from friends and my entire support network. I turned inwards and tried to figure it all out on my own. What does this mean for me? What’s my life going to look like? Who am I going to be? I didn’t find many answers. It seemed like so many doors were closing. The only clear thing was that the life I’d expected wasn’t the life I was going to have. But the more I read about ankylosing spondylitis, the less I saw myself in the stories. Everything was so clinical, and I just wished for something relatable. It was easy to find information about symptoms, treatments, and prognosis, but nothing about living with this disease as a young woman. I started blogging about my health journey to put out into the world the kind of story I’d wished for. I hoped to provide a sense of community so that the next person wouldn’t feel so alone. Little did I know, starting that blog would launch a whole career, transform me, and answer all those questions I’d asked myself. My life today, when I’m not playing Stardew Valley or Mario Kart, is all about health advocacy, community, and communication. I’m on social media talking about illness almost daily. I’ve gotten comfortable being visible with my disability. People reach out surprisingly often saying that, thanks to my page, they’ve gotten more comfortable with their own disability. It’s incredible. And the more open I’ve been, the more opportunities have found me, whether I’m writing for WebMD or rocking a feathery pink jacket at the Arthritis Society Canada fashion show fundraiser. I’m eager to do anything I can to change the face of chronic illness, to advocate for needed change, and to help people overwhelmed by a new diagnosis see that they’re not alone.” Steff Mississauga, ON #AnkylosingSpondylitis *Steff is a proud member of the Patient Voice Ambassador Program* #healthadvocacy #chronicillness #chronicpain #invisibledisability #advocate

Excerpt: Mouth and throat cancers caused by HPV have also been rising rapidly in Canada, and are 4.5 times more prevalent in males than females. One-third of HPV-related cancers in Canada are in males, who have lower rates of HPV vaccination than females.

A recent op-ed from Thanh Dang-Vu, Rébecca Robillard, Charles Morin, PhD, and Nadia Gosselin shows concern about the lack of public reimbursement for the first recommended line of intervention for #insomnia.

“In the ICU, they told me there are two types of spinal cord injuries. If you have a complete injury, a severed spinal cord, there’s really nothing that can be done. If you have an incomplete injury, well, it all depends. When I struck the vehicle while riding my bike, the injury left me completely paralyzed from the neck down. I was told I’d likely be in a wheelchair for the rest of my life. I’d need an elevator in my home. I’d never walk my daughters down the aisle. But my injury was incomplete, so nothing was certain. I wanted to go into rehab almost immediately, but every morning the ICU nurses would come in, do their assessment, and tell me I wasn’t ready yet. They’d ask me to wiggle my toes. I couldn’t. They’d ask me to squeeze their hand. I couldn’t. The work ahead of me was huge, but I was ready to fight. I had the right mindset for recovery, but mindset isn’t always enough. When I was finally ready for rehab, I was fortunate that I had time and resources that I could devote to getting better. I’ve met a lot of people who weren’t as fortunate, and the truth is, the system gives up on them. It breaks my heart. The system wanted to give up on me, but I didn’t let it. Not everyone has that choice. After three months of in-patient rehab, I was still in a wheelchair. But I was able to move my hands a bit. I was able to move my feet a bit. I’d relearned how to go to the bathroom. I was ready to go home, where my intensive physio would continue. The very first thing I did when I got home was park my wheelchair at the bottom of the stairs. My daughter found me there and asked me what I was doing. I was counting steps. There were 13 problems I needed to figure out. I moved my bedroom to my office on the main floor, but I didn’t put in an elevator. Then I got to work. After four months, I was able to get myself standing. Then I was able to get myself up one step. Once I could do one, I knew I could do two. And then three. The first time I managed all 13, I had nothing left for the trip back down. I kept working. And, last year, I walked my daughter down the aisle.” Part 2/2 Nick Burlington, ON Grief and traumatic injury

“I lost my wife to cancer in 2018 following seven hard months of caring for her as her health went downhill. It was an absolute honour for me to have the chance to be there for her through that time. In some ways, having had that experience made what came next easier, but in other ways, it made it much, much harder. Less than a year after my wife’s passing, when I was still in grief counselling and still working with my daughters to figure out how our family could move forward from this loss, I got into a very serious bicycle accident. Cycling had always been a passion of mine and it was a great release for me while I was grieving, so I was riding as much as I could. When I struck that vehicle, I died at the scene. I’d always heard those stories of people being called toward the light and then turning away, and it was exactly like that. The only thing I remember thinking in that moment was that I couldn’t leave my girls behind, not so soon after their mom had gone. And so I came back into my body. But the body I came back into could barely breathe. It was filled with excruciating pain in the neck and shoulders. And worse, there was no pain anywhere lower down, because there was no sensation at all. I was completely paralyzed. In the ICU, and later in rehab, and later still when I was home again, I was so angry. I was angry at the world for the timing. I hadn’t even started to put my life back together following the loss of my wife, and now this. And I was angry at my wife, too. I’d been there for her when she needed me most. And now I needed her more than I ever had before, and she wasn’t there. This anger, I later came to understand, was part of my grieving process. It was the grief I was still grappling with, and will always be grappling with, over my wife’s death. But now that still-fresh grief was combined with a new grief as I mourned the loss of my independence. Time hasn’t healed either wound. It won’t. I’ve developed tools to help me cope, but I’ll be dealing with these twin griefs forever.” Part 1/2 Nick Burlington, ON Grief and traumatic injury

HIV diagnoses are up 35% in Canada. CATIE’s Jody Jollimore explains why this shows the urgent need to connect people to treatment and care.