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.

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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.