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Cheryl Petruk, founder of Heal Canada, joined The Andrew Carter Morning Show to discuss Rare Disease Day, a global awareness initiative held annually at the end of February. The day aims to highlight more than 7,000 rare diseases that collectively affect millions of people worldwide.

Andrew Carter

Rare Disease Day is coming up at the end of the month. It’s a moment to shine a light on a part of the healthcare system that doesn’t often get the attention it deserves. Cheryl Petruk is a founder of Heal Canada, a leading voice in patient advocacy, is on the line. Good morning!

Cheryl Petruk

Good morning. How are you today?

Andrew Carter

I’m fine. So is this a day that we talk about what I call orphan diseases, people that, that, you know, diseases that people don’t really know that much about but need some attention?

Cheryl Petruk

Absolutely. So, you know, it’s a global awareness day that every year, at the end of February, you know, especially in leap years, um, tries to shine the light on more than seven thousand rare diseases. Um, you know, and these diseases will affect millions of people worldwide. It’s not just, you know, if there’s only one or two people in the world, it’s millions of people that have these rare diseases. And here in Canada, one in twelve people lives with a rare disease.

Andrew Carter

When you’re talking about, you know, thousands of rare diseases, how do you tackle a problem that big?

Cheryl Petruk

Well, gosh, you know, while each rare disease is, you know, individually uncommon, together they can, you know, affect a significant portion of a population. You know, so in Canada, while our population isn’t, you know, the same numbers as the USA or other countries, you know, really it’s, it’s a diagnostic odyssey that patients will be traversing on because they experience the same issues and symptoms as people that have, you know, a generic garden variety type of disease, you know, stress and difficulty accessing appropriate care. And, but, you know, really the burden of these rare diseases is really quite heavy financially, emotionally, you know, and even socially.

Andrew Carter

And probably not a lot of support, not a lot of information about what you have. I mean, I’m just thinking a friend of mine who has transverse myelitis, and when she, you know, she started the Transverse Myelitis Association because there was just no information on it. There was no, there was no support. There was, it, uh… People, you know, just don’t know these diseases.

Cheryl Petruk

Absolutely. You know, and one of the biggest gaps in our healthcare system with folks that have a rare disease is typically a delayed diagnosis. So, you know, folks will see whether it’s children or adults, they’ll see multiple physicians, you know, over several years before getting that answer. And so establishing an advocacy group or establishing that community, um, can help people living with that rare disease because, you know, specialized treatments, coordination of support services, you know, people want to not be alone. They want to know that there’s someone else there experiencing the same issues that they’re experiencing. So it’s really important for folks to come together and have that connectivity.

Andrew Carter

When someone comes down with a rare disease, I mean, do they, uh, is your organization a place where they can, they can start?

Cheryl Petruk

Absolutely.

Andrew Carter

Maybe you point them in the right direction. How would they get in touch with you?

Cheryl Petruk

Our website is www.healcanada.org. We like to amplify the voice of the patient organization. So absolutely. If someone comes to our organization and looks for information, we’re gonna steer them to that community-based organization where they can be amongst, um, other folks that have that same disease, where they can get that specialized information. Um, you know, it’s really important to, I don’t want to say to funnel those patients, but that’s where the grassroots is, and that’s where they need to connect, you know, with their community. So it’s really about awareness, about learning about rare diseases and sharing that information so that people who are diagnosed with these rare diseases can get the information that they need, and help them live a better quality of life with better healthcare outcomes.

Andrew Carter

Cheryl, thanks very much for your time. Good luck with this.

Cheryl Petruk

Thanks so much. Have a great day.

Andrew Carter

That is Cheryl Petruk, founder of Heal Canada.

This interview was published by The Andrew Carter Morning Show. Listen to the original podcast by clicking here.

A partner‘s cancer diagnosis led this woman to discover her passion for patient advocacy

Cheryl Petruk never planned to become a magazine publisher or the founder of a not-for-profit organization. She was working as a HR professional in 1991 when her husband, Eugene Petruk, was diagnosed with a rare slow-growing blood cancer that is in a group of blood cancers known as myeloproliferative neoplasms (MPNs).

To support her husband and be the best possible caregiver, Cheryl learned everything she could about the disease, but it wasn’t easy.

Cheryl and Eugene talked to doctors, reached out to other patients and scoured the internet to find answers to their questions about this rare disease.

“Patient advocacy is so important when you’re facing a serious health care concern and you can’t be an effective advocate if you don’t have good information Cheryl explains. “I figured that if I had questions, there were undoubtedly others who
had the same questions.” 

In 20l4, Cheryl and a group of others founded the Canadian MPN Network, a patient advocacy group that has become a primary resource for people impacted by MPNs. The organization provides information and helps connect patients and their caregivers with support groups. Cheryl served as the chair of the volunteer board for more than five years.

“Participating in a support group can really make a difference when you’re dealing with a serious health issue,” says Cheryl. “When you get together with other people, you don’t feel so alone.”

When Cheryl’s husband, succumbed to his disease in 2018, she might have chosen to walk away from the advocacy work she had been doing, but instead she doubled down. The Canadian MPN Research Foundation, a not-for-profit organization dedicated to funding research for MPN blood cancers in Canada, was established in 2018 and she went on to serve as the organization’s executive director for more than five years.

During this time, she had the chance to meet and help others impacted by MPN blood cancers and one of those people was Wendy Reichental. Wendy was approaching her 60th birthday when abnormalities were detected in her blood tests at an annual medical check up.

“I had no symptoms, so the cancer diagnosis was a complete shock,” Wendy says. “I was fortunate that it was caught early. I wanted to learn more about the disease, so I Googled MPN Canada, and this organization came up. I called and spoke to the executive director, and she became my lifeline. Cheryl and I have never met in person, but she has become a dear friend.”

Progress has been made with treatment of MPN blood cancers and even though there isn’t a cure, it can be controlled with long-term chemotherapy.

“Doctors have predicted that I’ll die with the disease, but I won’t die because of it,” Wendy explains. “You take it one day at a time. I am fortunate that I haven’t experienced hair loss or other more serious side-effects from long-term chemotherapy.”

In 2023, Cheryl stepped down as executive director of Canadian MPN Research Foundation and focused her efforts on Heal Canada, an organization she founded in 2018 that is dedicated to patient education and patient advocacy in a broader sense, not limited only to MPN blood cancers.

A year later, she asked Wendy to assist with a free magazine called E3 Advocacy Digital Magazine for Heal Canada. The magazine’s current issue is focused on navigating insurance and health coverage, a topic that applies to anyone who is dealing with a serious disease or illness. Wendy says that assisting with the magazine has given her purpose and allowed her to focus on helping others rather than becoming consumed with her own illness.

Patient advocacy has become a passion for Cheryl who found her life’s work because of her late husband’s cancer journey.

“I am enjoying what I do,” she says. “Helping people help themselves in their own health journey is very rewarding.”

This story was published by Montreal Gazette. To read the original blog post please click here.