Why I’m Excited About the New PF Forum

Why I’m Excited About the New PF Forum

younger than 30

Thinking back to my days of high school many years ago, I never imagined I would become involved with an online publication. I hated writing articles, papers, and essays, and I had little interest in research, chronic illness, or how words could be used to connect people so deeply. I thought I was invincible and simply would never have a life-threatening disease like IPF.

I was wrong in thinking this. But to my surprise, it’s not all bad. Being diagnosed with IPF at a young age was devastating, and there are days when the physical loss of activities I once loved is overwhelming. However, as a result of my illness, I have been granted opportunities I wouldn’t have had otherwise as a healthy young adult.

One of those opportunities has been getting involved with Pulmonary Fibrosis News as a columnist and as a writer of the social clips on their webpage. Through this, I have the privilege of connecting with many other patients whose stories have touched my life, given me hope, and inspired me in ways that I couldn’t otherwise know. I am very thankful for this. I am also thankful for the ways that my role continues to evolve with PF News, and I’m excited for the upcoming launch of a new project on Thursday, Feb. 2: The PF Forum!

As many of you know, social media platforms and online communities are a hub for people to connect through shared interests or experiences. Chronic illness is no different. There are many different pages aimed at bringing people with similar diseases together throughout the World Wide Web. As an IPF patient, I belong to Facebook pages, blogs, and other online communities for information-sharing and connecting with others who have IPF.

I am grateful that these exist. However, I often think how great it would be if there was one centralized hub where credible information frequently gets shared. In that hub, there would be designated groups for patients and caregivers to share their experiences separately. Where people could go to find and connect with others who are in the same stage of their disease (e.g., pre- and post-transplant, newly diagnosed, in palliative care, etc.).

Facebook and other social media platforms are wonderful tools for connecting patients, and the new PF Forum is designed to complement the already-existing online communities for PF patients. It’s not to discourage users from these sites — we recognize the benefits that they offer. That said, I’d like to encourage you as a PF or IPF patient or caregiver to get involved with the PF Forum. I will be moderating the forum and ensuring that frequent, relevant, and credible information is shared for both caregivers and patients. I look forward to facilitating discussions in the forum groups to engage patients and honor your stories, with the goal of reducing feelings of social isolation that many patients feel because of their diagnosis.

The forum will be similar to a chat room where dialogue will be welcomed and encouraged by everyone. I hope to attract to the discussions patients, caregivers, and even researchers and medical professionals. One thing unique to the forums is the different groups that patients and caregivers can join to be part of a more focused support system. More information about the specific breakdown of some forum groups can be found in my social clip: “What to Know About the Brand New Pulmonary Fibrosis News Forums.”

As an example, after connecting with many of you informally, you shared with me that it would be helpful to have some age-specific groups for patients living with IPF/PF. This is because, naturally, the worries and fears that patients have are different in various life stages. We have honored this in building the new forum and hope you will find it helpful.

The forum will continue to be in development, even after it’s launch on Feb. 2. As always, we would love for your feedback and contribution in helping to shape the group topics and discussions. Your information and experiences are valuable, and we welcome all of your contributions.

Please stay tuned and help us share the excitement of this new and unique online platform for PF and IPF patients by spreading the word. Share this column and let patients and caregivers know what is on the horizon through PF News!


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.


    • Brenda Denmark says:

      I am looking forward to having something that will work for me. I am on oxygen but not all time. I am 70 yrs old and need people who are or have been diagnosed with IPF.

      • Charlene Marshall says:

        Hi Brenda,

        Thank you for reading my column about the forum, and for sharing a bit about yourself. You are most welcome to join the forums, and to do so please follow this link: https://pulmonaryfibrosisnews.com/forums/ and create a profile for yourself to join in on the discussions.

        I also have IPF and am 30 years old. I’d love to chat with you a bit more, as it always feels comforting when you can connect with others who truly understand. I also use supplemental oxygen, but not all the time, although, it feels like I have it on more now than not. You also raise a good point, I think I will start a forum page dedicated just to patients with IPF. For us, it can sometimes feel like an added layer of confusion about the diagnosis, since we don’t know how or why we got it. Great idea! I look forward to connecting with you again soon.


      • Molly Taylor says:

        I am 71 years old and was diagnosed with IPF in April / 2018.
        Problem I am having is I have to eat more food than I ever had. I have never eaten 3 times a day. Also if I wake at 9AM and space Esbriet out to every 7 hrs as suggested by so many others that have this disease I am having to eat right before bed and last 3 pills at 11 pm far too late. I take other meds at bedtime for sleep and anxiety. Far too many drugs at bedtime. Any suggestions

        • Charlene Marshall says:

          Hi Molly,

          Thanks so much for reading my column and for connecting via the comments. Sorry to hear of your recent IPF diagnosis, I know and remember how tough of a time that is…

          I am not on Esbriet so I can’t comment on the schedule of eating and/or taking medications, but I have heard from others who struggle with this as well. Is there any way you can eat more often but smaller portions? I know the idea is that you want to eat less than 3x per day and that Esbriet is very tough to stomach without food due to the nausea and other side effects. However, could you eat a smaller portion so you don’t feel as full or like you’re eating too much? I know others mention that a big glass of water before taking the medication helps as well. This has been a popular discussion in our forums with other patients as well. If you’re interested in reading others’ suggestions, you can sign up for the forums here: https://pulmonaryfibrosisnews.com/forums/

          Warm regards,

  1. Russel N Wyckoff says:

    Is their anyone out there that knows if people with IPF can get Disability
    through Social Security. If so, do you get monthly SS plus Disability?

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