Suzanne Dubois: How a mother of a VTE patient now advocates for VTE research and knowledge through CanVECTOR
Looking back, Suzanne Dubois describes it as the “perfect storm.” A storm that would completely alter her life and lead her on a path from concerned mother to national patient advocate and research collaborator.
It was 2015 and Suzanne, who lives in rural southwestern Ontario, Canada, said goodbye to her 16-year-old daughter as she boarded a flight to Japan for a student exchange trip. Suzanne may have had a few worries about her teenage daughter traveling internationally, but blood clots were certainly not on her radar.
While in Japan, her daughter contacted Suzanne to tell her that she had a swollen leg and thought she may have pulled a muscle. A visit to the urgent care diagnosed the swelling as an infection. She was prescribed an antibiotic, but the pain and swelling continued to worsen. She also experienced shortness of breath and lightheadedness, which she attributed to Japan’s severely hot weather at the time.
“As a mom, I knew something was wrong. I thought to myself: How can her whole leg be swollen, but she is not in the hospital? What is going on?” Suzanne recalled.
Suzanne sent a photo of her daughter’s leg to a friend who works in the medical field. The friend warned Suzanne that it could be a blood clot and that she should seek immediate medical attention. Suzanne’s daughter did so and she received the diagnosis they did not expect—at just 16-years-old, she had a venous thromboembolism (VTE).
“She had a massive deep vein thrombosis in her leg from her ankle up into her abdomen, which had caused a bilateral pulmonary embolism,” Dubois said. “We feared for her life.”
The blood clot was provoked by several factors, including her daughter’s long-haul flight from Canada to Japan and she had also recently started taking hormonal birth control. She also had an unknown genetic predisposition, which she discovered later.
Suzanne travelled to Japan and spent two weeks with her daughter in the hospital, wherein she received excellent care. Her daughter received IV therapy and surgical interventions, including inferior vena cava filter insertion and removal. Back home in Canada, she said her daughter continued to receive great care, but it was challenging to re-navigate her treatment plan and care in a different country. Available medications vary by country and she had to change her anticoagulant at home in Canada.
Six months later, her daughter was off her anticoagulants, but she soon had a recurring blood clot. Following the second diagnosis, Suzanne pushed for her daughter to undergo further testing, which revealed she has Factor V Leiden and May-Thurner Syndrome.
“As a mother and a caregiver, I wanted answers. I realized that depending on what door you walk through and whom you spoke to, the care plan and the answers can be different. I found that very concerning,” she said. “What about the people who do not feel comfortable questioning their treatment, or who do not have someone to advocate for them? That’s when I decided I wanted to do something to help other patients.”
In 2017, Suzanne joined the Canadian Venous Thromboembolism Research Network (CanVECTOR), a Canadian patient-oriented, community development program that is centered on venous thromboembolism (VTE) related research, training and knowledge translation.
She is a member of CanVECTOR’s Patient Partner Platform, wherein she lends her expertise and experience as a caregiver of a VTE patient. She helps with national VTE research studies and offers recommendations to make messages and patient documents more understandable and better focused on patient needs. Her work varies from reviewing protocols and recruitment lay summaries, to supporting side papers on qualitative research. The Patient Partner Platform currently has eight partners and is seeking new members.
One of her favorite projects was a study that focused on the psychological aspects of a VTE diagnosis, which she shared is an often-overlooked component of the recovery process.
“I want healthcare professionals to prioritize the best care for every patient that comes in. Part of my reason for becoming a patient partner is to be on the forefront of research and know about new treatments coming out for patients,” she said. “I would like to think that any healthcare professional—anyone who might be meeting with a patient with VTE—is keeping abreast of new research and will provide that care to the patients. I want to assist research and improve outcomes—but that doesn’t mean anything if the healthcare professionals out there giving treatment aren’t aware of the new research.”
Today, Suzanne’s daughter is 24-years-old. She lives with post-thrombotic syndrome (PTS) and has to make daily adjustments. She wears compression stockings every day and her leg is chronically swollen and often in pain. She gave up playing soccer and she has been mindful of career options that do not require her to stand for long periods. She remains on anticoagulants for the long-term and the risk of bleeding and/or a recurring clot is always a worry. She also has extra considerations for her future, such as the possibility of complications in pregnancy if she chooses to start a family.
Although her daughter is now an adult and her own self-advocate, Suzanne moves forward in her research and patient advocacy work with CanVECTOR, where she now serves in a leadership role on its Scientific Steering Committee and contributes to the guidance of network operations. She pushes forward with the aim to increase knowledge and education about VTE through research and patient collaboration.
“I’d like researchers to be receptive to the idea of including patients and caregivers with lived experience on their research teams from the early phases of their projects. Patient partners can give valuable insight into the challenges experienced by patients and their resulting preferences and priorities for care and treatments,” she said. “In my six years of involvement with CanVECTOR, I have seen a shift to where the patient partner has moved into the role of collaborator, where our input and support are valued in the planning and design of projects. I hope that in the future, more researchers will recognize that patient partners can make significant contributions that can result in stronger, more successful research results.”
Learn more about the work of CanVECTOR at canvector.ca.