Cheryl Petruk, the Executive Director and Founder of the Canadian MPN* Research Foundation (CMPNRF)**, shares her thoughts and insights on why collectively raising our voices and generating awareness is critical now more than ever.
Why is Blood Cancer Awareness Month important?
Blood Cancer Awareness Month brings to the forefront the importance for all Canadians to take care of their health; everyone needs to go for their annual check up. Blood cancers can be invisible diseases that can only be detected through a blood test; a simple Complete Blood Count (CBC) can show if anything is abnormal. Especially as we are learning to live in an uncertain world, Canadians need to focus or refocus on their health.
Blood can tell us so much about a person’s health.
What is your message for BCAM?
My message is simple: be proactive about your health. Healthy living starts from the inside beyond healthy eating, exercising and sleep. Be your own advocate.
What are the biggest challenges with blood cancers since it’s an invisible disease?
Symptoms like fatigue are often quickly dismissed by general practitioners or attributed to something else such as aging, having a busy lifestyle or other conditions like menopause. Physicians need to be more astute and dig deeper – go beyond just the initial symptoms.
What is the key to good physician/patient relationship?
Two-way communication is the key to a good relationship. The CMPNRF developed the MPN Genie® exactly for that reason. The app is a tracking tool that enables patients to log symptoms on a regular basis and share this data directly with their health care providers, enabling more effective management over time, as well as higher-value face to face interactions between patients and their doctors.
Physicians understand the science and the treatments. Patients understand the disease and how it impacts them: burden of disease and quality of life. Both are experts in their own respect. Patients should be empowered to share their lived experience. It will benefit them both.
What is the role of the care partner?
The care partner keeps the patient on track and focussed and monitors their daily living and quality of life. The care partner provides a second set of eyes and ears because for example some patients may experience brain fog. The care partner will also validate the important information during medical visits. But more importantly, care partner empowers the patient to live the best quality of life.
I know this firsthand because I was the care partner to my late husband who passed away after a valiant battle with myelofibrosis. The key learnings I takeaway from my experience is that at the time, in the early 1990s, we should have been more educated.
So today, I am utilizing all my knowledge and fighting for the MPN community. I am motivated to help the whole ecosystem. I like to say that I am HIKE-ING for them (Hope, Inspiration, Knowledge, and Education).
*MPN: myeloproliferative neoplasms
** The CMPNRF is a Registered Charity.
