How the ‘Pulmonary Fibrosis News’ Forums Differ From Other Online Communities

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Before you can access the groups and discussions in our new Pulmonary Fibrosis News forums, you’ll need to sign up and create a profile. To do this, go to the Forums page and click register; you’ll then be prompted to enter your name, age and whether you are a PF/IPF patient or caregiver. You’ll also have the option to write a short 300-word biography about yourself.

From there, you’ll be able to see all of the forum groups, along with all the topics that fall within that group. As an example, in the Pre/Post Lung Transplantation group, you will see topics such as “medication side effects & management” and “acute vs. chronic rejection concerns.” Please contribute to these existing topics, but feel free to add your own.

MORE: What to know about the brand new Pulmonary Fibrosis News forums

These forums have been designed to complement other online communities supporting PF patients. It offers another opportunity for patients to ask questions, engage in conversation and feel connected to others living with IPF/PF.  However, our forums do differ from other platforms in several ways:

We have a moderator.
Charlene Marshall, a regular columnist for Pulmonary Fibrosis News will be moderating the PF forum and frequently available for discussion, questions or support for patients and caregivers impacted by IPF/PF.

Expect regular/frequent contributions.
The role of the moderator will also be to ensure the forum stays active. Whether the discussion is on a small or large scale, or whether it’s related to new literature released or just an invitation for members to discuss an experience they had; contributions to the forum will be on a regular basis. The moderator will also respond to questions, concerns or fears from forum members in a timely manner, eliminating the feeling(s) of social isolation that some patients feel on a regular basis.

There are both private and public groups.
Some Pulmonary Fibrosis News forum groups have been designed for specific populations only and are therefore private. Unlike a Facebook page where a group welcomes anyone impacted by the disease, some of our forum groups have been created for only patients or caregivers. This ensures that patients can voice any/all fears without the worry that it may be seen and misinterpreted by caregivers. This also goes for caregivers — they’ll be able to voice their concern without fear of patients seeing their discussions. The intention is to offer each group a safe platform where they can voice how they’re feeling.

We’ll monitor the audience.
Unfortunately for all social media platforms and online communities, spam and false advertisers are a growing concern. With a moderator in place, all spam concerns or companies looking to sell products or engage patients for financial purposes will be promptly deleted. In addition, all inappropriate comments will be deleted. Bullying or belittling anyone won’t be tolerated and will be shut down by the forum moderator.

Additional features of the forum include the ability to use and add various media to your posts, including videos, images, links and podcasts. There is also a private messaging option, giving you the opportunity to connect with another member of the community and discuss more personal or private issues. To do this, simply go to the profile page of the person you’d like to reach out to and click the “private message” tab to start a conversation. You will receive a notification if and when they reply.

MORE: How to find positives when living with IPF

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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4 comments

  1. Denny Watkins says:

    REGARDING:
    Before you can access the groups and discussions in our new Pulmonary Fibrosis News forums, you’ll need to sign up and create a profile. To do this, go to the Forums page and click register; you’ll then be prompted to enter your name, age and whether you are a PF/IPF patient or caregiver. You’ll also have the option to write a short 300-word biography about yourself.

    I don’t think I was asked to fill in some of the information listed above.
    I don’t remember doing the following:
    PF/IPF patient or caregiver
    biography

    • Charlene Marshall says:

      Hi Denny,

      Thanks so much for signing up for the PF forms and for sharing with us that some information on profile fields was missing for you. We’ll look into that! Likely it is because the production team and I are actually just in the midst of talking about profile fields, meaning: what information would be helpful for people to share about themselves when they’re joining the forum. So, your timing was impeccable to write this to us! Stay tuned, we are going to add more profile fields where you can add some information about yourself on your profile page, even if you have already registered. Actually, make you could help me… when thinking about when you signed up for the forums and created your profile, what are some of the things you would have liked to share with others? We are considering things like: role in the PF community (ie. patient, caregiver, researcher, etc), type of PF (ie. familial, secondary cause, IPF), date of diagnosis, lung transplant candidate, etc. We are hoping that if more profile fields are made available then it will be a quicker way for new members to connect with others. If you would be willing to share your feedback/thoughts on this, we’d be very grateful.

      Thank you again for your feedback!
      Cheers,
      Charlene

  2. Richard Johnson says:

    I have had Ipf for a little over five years now. I’m up to 15 liters of oxygen with activity. I have been on esbriet for the entire time and am doing pretty well with it. I have been turned down for a transplant on two different occasions, which was a real roller coaster ride of emotions for me. I just think it would be interesting to hear from other people with the same disease. Maybe I could be of some help to them or them to me.

    • Charlene Marshall says:

      Hi Richard,

      Thank you for reading my columns and getting in touch via the comments. I appreciate hearing your story, although sorry to hear about being turned down for transplant, I can’t imagine what an emotional roller-coaster that would have been for you! Have you joined our PF forums? They are free and can be found here: https://pulmonaryfibrosisnews.com/forums/ there are lots of discussions here, along with opportunities, to help other patients and hear their experiences as well. I find it so beneficial to connect with others who have IPF because they just “get it”, whereas others don’t no matter how hard they try. Hope this helps! Thanks for writing us.
      Charlene.

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