My Top Takeaways from PFF Summit 2019

My Top Takeaways from PFF Summit 2019

I am home safe and sound after a whirlwind three days at the Pulmonary Fibrosis Foundation (PFF) Summit in San Antonio. In a previous column, I wrote about why I was looking forward to attending the summit. Being among other PF patients and their caregivers was beneficial in ways I hadn’t realized I wanted or needed. While it is nice to be home, I wish that I were still at the PFF Summit for many reasons aside from the warmer Texas weather, as Canada has just been hit with a nasty blast of wintry weather.

The summit was like a utopia in some ways. While the environment was imperfect — after all, attendees are dealing with a terminal lung disease — I felt understood and more at peace with my illness than ever before. People I hadn’t previously met offered to help me with tasks that have become difficult; others offered hugs and comfort through my tears of grief at the harsh realities of idiopathic pulmonary fibrosis (IPF).

Since returning home, I’ve had many realizations, the most significant of which is the importance of hearing one another’s stories. The sessions that I found most empowering involved a “patient experience” aspect, where patients and their loved ones were invited to elaborate on a topic being discussed. I’ve since recognized how much I need to hear from others as we share our coping strategies.

I learned a lot about myself, the PF community, and the experts who are dedicated to finding medical solutions for this disease through research and clinical trials. I look forward to sharing pages of information with the online PF community over the next few weeks. In the meantime, I want to share my biggest takeaways from the summit:

  • We are not alone: While living with IPF might feel lonely at times, I can assure you that other patients care and want to support you. During each encounter with a member of the Pulmonary Fibrosis News Forums, I was overwhelmed by their empathy, support, and kindness. If you’re struggling, please reach out: You are not alone, and others in the PF community want to support you. To those who offered laughter, advice, and hugs at the summit: Thank you — it was exactly what I needed.
  • Dedicated experts: One room at the summit was designated for exhibitors showcasing clinical trials, treatment developments, and research. While I know many big pharmaceutical companies are looking to sell their products and seek funding, I didn’t feel that this was on the agenda of any of the exhibitors present. I spent time talking to employees of Respivant, who were showcasing the Scenic clinical trial of an IPF cough treatment, and I was impressed by their genuine interest in understanding our disease and how it affects our lives. Looking around the hall, I felt comforted that so many experts are committed to developing effective treatments to improve quality of life and finding a cure.
  • Feeling supported: My columns often reflect positivity and strength in the face of IPF. However, I struggle with the realities of this disease and grieve for the life I had before my diagnosis. As I mentioned, I connected with PF News Forum members at the summit, as well as PF advocates. As we shared our stories, I felt supported instead of usually being the one giving support, and I hadn’t realize how much I needed that comfort.
  • Resources are out there: If you’re struggling to find answers about IPF — whether related to medication side effects, healthy eating, clinical trials, pulmonary wellness, or another aspect of the disease — resources and support are available. I obtained information on all these topics and more, and I look forward to sharing many of them with you in the coming weeks through the PF News Forums and in future columns.

***

Note: 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 other 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. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

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!

10 comments

  1. Terran says:

    Hi Charlene,

    Just wanted to say that I’m glad you had such a great experience at the summit and I am looking forward to hearing more about it!

    I’m just catching up on your columns and they resonate with me as I was also diagnosed in 2016 (then 29). Thank you for sharing!

    • Charlene Marshall says:

      Hi Terran,

      Thank you so much for reading my columns and reaching out via the comments. I so appreciate hearing from you, especially with the similarities in our age. I’m so sorry you were diagnosed at a young age like I was. It’s so tough navigating this cruel disease.

      The Summit was great and I look forward to sharing more about it over the coming weeks. Stay tuned 🙂

      Thanks for writing.
      Charlene.

  2. Rene Hakkenberg says:

    Thank you Charlene for making the tiresome trip to the San Antonio IPF summit for the benefit for all of us, IPF patients. We look forward to hearing more about it. With much appreciation, Rene

    • Charlene Marshall says:

      Thanks so much Rene!
      I am still trying to figure out how best to disseminate the information on the forums over the next few weeks. Got some really good tips on healthy eating and exercise and how beneficial this combo is for patients, despite it being so difficult. Stay tuned, I look forward to sharing more but still working on recovering as the trip (after only being home from Hawaii for a few weeks) has really tired me out.
      Charlene.

  3. Bill Burke says:

    Charlene,

    I am sorry Charlene, but I feel little encouragement from your four key takeaways. I wanted to hear that PFF efforts in convincing The Congress and the CMS that the system to insure the smooth distribution of oxygen supplies and equipment to PF patients by DME’s suppliers has resulted in measurable improvements. And, I wanted to hear about successes and promising study results in stoping the progression of fibrosis in the lungs of PF patients. That’s what I wanted to hear! Instead, you took away some well used platitudes that I’ve heard, and believe are true, many times in the past. Didn’t you take away anything that’s new and encouraging?

    • Charlene Marshall says:

      Hi Bill,

      Thanks for reading my columns and reaching out via the comments.

      I’m sorry you were disappointed in the first column I wrote about following the PFF Summit. If a promising new cure or drug development was in the making, the Pulmonary Fibrosis Foundation wouldn’t wait for an event like the Summit to reveal it, so I’m sorry you had a notion that something like this would evolve following the conclusion of the Summit. I don’t think the PFF’s focus is on oxygen distribution among patients, as this really is between the hospital/physicians and oxygen suppliers. There are lots of promising studies and results occurring from various foundations and biopharmaceutical companies though some of the information is over my head so I don’t feel comfortable writing about all of it, however, some of it is in the making of articles and forum posts to come. You can find all the exhibitors who attended the Summit on the PFF website, and then follow up with their efforts of studies and clinical trials independently on their sites. It might be beneficial for you to attend the next Summit if possible Bill, if you’re seeking out specific information from the event.

      Sincerely,
      Charlene.

    • Charlene Marshall says:

      You’re great Noah – I’m so glad we had a chance to meet in person at the Summit! Looking forward to future collaborations together 🙂
      Char.

  4. Scott says:

    Charlene,
    Your columns are totally fresh and honest and I appreciate that so much. I was just diagnosed and although I’m 55 I don’t look or feel it until recently due to the shocking situation that has invaded my life all at once out of left field. With that being said, your columns and frankness are a blessing and I am only thinking positive thoughts for you and all of us facing this unknown monster.

    • Charlene Marshall says:

      Hi Scott,

      Thank you so much for reading my columns and reaching out via the comments. Your kind words really lifted my spirits today, as the cold and damp weather is causing issues for me among other viral and bacterial-related issues. So sorry to hear of your diagnosis of this monster, that is a good way to put it. My one piece of advice when newly diagnosed: Google is not your friend! Find information through credible sources only and voice your concerns with your physician. Was it IPF you were diagnosed with? If so, see if you can get on one of the two FDA approved medications to slow down the progression – Ofev or Esbriet. Feel free to write any time Scott and thank you again for writing.

      Kind regards,
      Charlene.

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