This guest blog, from Sharon Lee, Executive Director at CPFF, is to mark Pulmonary Fibrosis Awareness Month this September. Find out what the organization is doing to raise awareness and how you can show your support.
Throughout the month of September, the Canadian Pulmonary Fibrosis Foundation (CPFF) is sharing the stories of those living with pulmonary fibrosis (PF), in a series of short videos.
“It’s one way we are raising awareness of this chronic lung condition, that has no cure, and how the brave people who live with PF and those who care for them, come from all backgrounds, ages and parts of the country,” says Sharon Lee, CPFF’s Executive Director.
You can find these stories, as well as stories and tributes submitted by the PF Community at CPFF’s HopeBreathesHere.com. You can share your story, photos and videos on the website via Facebook, by using the hashtag #hopebreatheshere. You’ll also find details on a host of activities including a CPFF virtual walk, virtual bubbles and a series of educational webinars, addressing PF research and various topics on living with PF. You may also see PF highlighted in your local media, and on social media, as we share information about the disease during Pulmonary Fibrosis Awareness Month.
One of the Hope Breathes Here featured individuals is Naomi Matsushita of Toronto, Ontario, who has interstitial pneumonia, one of the 200 types of PF. After a bout of the flu nine years ago, she was left with a lingering cough and was eventually diagnosed with PF. She was a very active person and loved the theatre, but became very fearful of infection, even pre-COVID.
The pandemic has exacerbated this. Before the pandemic, she found help in the pulmonary rehabilitation program called “Singing to Breathe,” a choir for people with lung issues. Her husband has also been a great help taking on more and more caregiving tasks over time.
Rob Garbutt of Winnipeg, Manitoba lives with idiopathic pulmonary fibrosis or IPF (one of the most common types of PF, where the cause is unknown.) A physically active fellow, who skied, waterskied, and rode mountain bikes, like Naomi, Rob didn’t seem to recover as usual after a bout of flu 11 years ago.
He was first diagnosed with chronic obstructive pulmonary disease (COPD) and then later with IPF. For about eight years he was able to continue with his activities, until in 2019, he was “hit really hard” with an exacerbation and hospitalized for a week. His PF has since worsened over time.
Rob still tries to remain as active as possible – with an incumbent bike pulled by his dog Maggie, his “best friend,” or by fixing his dock while hooked up to his portable oxygen tank. “I’m not one to be stopped,” he says.
Supported by his wife (and dog Maggie), Rob does get frustrated by the changes in his abilities, but belonging to a support group does help. In the meantime, he is waiting for the call for a lung transplant.
John Dennis returned to Halifax, Nova Scotia, this summer following a single lung transplant performed this past March in Toronto. This month, John is determined to raise funds and awareness for pulmonary fibrosis in his province. Mission Possible for Hope Breathes Here with John Dennis will see him riding an ebike daily over various trails and highways in Nova Scotia as part of the CPFF Hope Breathes Here Clarke Walk event.
He’ll be seeking pledges with a goal of raising $25,000 and you can support his effort through the online Walk registration at HopeBreathesHere.com. “I will ride anywhere I am asked and I will speak to any group, so that I can raise awareness of pulmonary fibrosis and raise funds for the cause,” says John. You can read more about John’s PF and transplant journey in the April 2021 issue (article 4) of the CPFF newsletter.
Follow RepeatDx on our social media channels, Facebook, Twitter and LinkedIn, to keep track of the Pulmonary Fibrosis Awareness Month information and facts that we will be sharing throughout September. You can view a collection of our previously featured guest blogs here.