Collectively Raising Awareness for PF: What’s a Patient’s Responsibility?

As October comes to a close and pink ribbons (the universal sign for breast cancer awareness) start to disappear, it’s hard not to feel as though some diseases take priority when it comes to awareness campaigns. If you ask someone whether or not they know the colour of breast cancer awareness, you are likely to find that most people can identify that it’s pink. Contrary to that, if you ask people if they know what the colours of the pulmonary fibrosis (PF) awareness ribbon are, you’re more likely to have people asking what PF is instead of answering your question.

Why is it that a disease that kills as many people per year as breast cancer has significantly less awareness?

For many chronic illnesses, funding for both research and improving the quality of life for patients often comes from awareness campaigns. These campaigns showcase the disease in hopes of generating funds that can go towards finding a cure.

However, a patient living with PF and their family or care providers often have so much on their plate just navigating the various needs of the disease that it can seem impossible to also fundraise and generate awareness.

And so the question is: what’s a patient’s responsibility when it comes to raising awareness of PF? How can someone living with this life-threatening disease do more to raise awareness when the tasks of daily living become so overwhelming and tiring due to shortness of breath and fatigue?

MORE: Four breathing exercises for pulmonary fibrosis

Here are a few ways that patients can help raise the profile of PF and create awareness in unique, impactful ways:

1. Harness the power of social media (and encourage friends to do the same).
While social media faces scrutiny for many reasons, it can also be incredibly powerful in creating public awareness about any given topic. You may recall the “Ice Bucket Challenge” for ALS that took over the Internet a few years ago, which generated millions of dollars and led to a breakthrough in research. This is a prime example of how one grassroots social media campaign had a huge impact. The same type of idea could used to generate awareness for many other diseases, including PF.

2. Look into group education opportunities.
Talk to your school, place of work, church network or in any other type of group setting. You can approach this specifically from the position of symptoms they could look for in the early stages of PF. Position this educational conversation from a point of caring about other people’s health and identifying the symptoms of PF early, which also creates an opportunity to educate others on the importance of lung health overall.

3. Share your story!
Nothing is more impactful when it comes to raising awareness about a disease than a personal story of how it has impacted someone’s life. This takes a lot of courage and strength, but it has the potential to create a ripple effect of people then talking about the disease and raising awareness of it, especially in the right context or environment.

4. Team up with disease-specific organizations or volunteer.
Specifically for PF, there are a few credible organizations dedicated to raising the profile of PF awareness including the Pulmonary Fibrosis Foundation or the Canadian Pulmonary Fibrosis Foundation. Teaming up with these organizations can be a great way to raise awareness, especially since they likely already have campaigns on the go. If not, perhaps you could collaborate with them on a new initiative that would help raise awareness of the disease or volunteer your time to a project that they are already working on.

MORE: Three professionals to talk to before traveling with pulmonary fibrosis

Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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