What to Know About the Brand New ‘Pulmonary Fibrosis News’ Forums

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There are a plethora of benefits for patients using online social media platforms. They help members of the community connect, and share and receive information about all aspects of the disease.

Online social media platforms have a similar preface but do have differences in how and why they operate, which is why Pulmonary Fibrosis News is excited to launch forums on February 2.

These forums have been designed specifically with readers and patients in mind. The main goal is to encourage readers to connect, ask questions and engage with the PF community. At times, PF can feel like an isolating illness and the PF forum will offer a more concentrated platform to help readers relate to one another.

Some groups have been designed to facilitate connections and encourage discussion among patients who live in similar geographical locations, or for those who fall within a certain age bracket, or for patients who are either pre- or post-lung transplantation.

Below are some examples of the groups we’ve put together to help members of the PF community connect with one another:

Living with pulmonary fibrosis, 50+: Connect with others living with PF/IPF in a similar life stage as you, and discuss issues such as limited mobility and physical therapy, tips and tricks of managing daily life with oxygen, planning for end-of-life care (if applicable), pain management and more.

Canadians living with pulmonary fibrosis: Canadians have noticeable differences in healthcare and thus, in the treatment of pulmonary fibrosis. This group is for Canadian patients or caregivers (immediate family members or spouses) supporting someone living with PF. Join this group to find information on local support groups, discuss treatment options, medical facilities and more as it pertains to Canadian patients living with pulmonary fibrosis.

MORE: Using mindfulness practices to reduce IPF-related stress

Pre- and post-lung transplantation: This group is for patients living with pulmonary fibrosis who have been referred to a lung transplant program, or who have received their new gift of life. Many patients know that treatment for PF will include a lung transplant, however, this group is for those in the active stages of pursuing transplantation and those who have received new lungs. Discussions will include medication management, physical pre- and post-transplant care, caregiver support and the many ways that transplant can impact a patient and their family, including the mental, social, emotional and psychological aspects.

Young adults living with pulmonary fibrosis: Connect with others living with PF/IPF in the same life stage as you, and feel connected/less isolated when discussing things such as introducing your disease in a new relationship, intimacy and fertility, facing mortality as a young adult and helping others understand your disease.

Caregivers/spouses: Inevitably, pulmonary fibrosis affects caregivers and spouses as much as the patients, and this group is a unique circle of support solely for them. Join to discuss the emotional, social and physical impact of caring for someone with PF/IPF and explore coping techniques from others sharing the same experiences. Share your strategies, and enjoy the comfort and company of others who know exactly how you are feeling as a caregiver of someone living with PF/IPF.

Groups and discussion topics will continue to be developed and built after the launch of the forum, and we hope readers will start their own discussion topics. If you have any suggestions, please feel free to leave them in the comments section below!

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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