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.