6 Resources to Help Patients Navigate Their Diagnosis

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There’s a lot of literature out there that highlights strategies and tips for coping with a life-threatening illness diagnosis. The challenge is that most of this literature is written based on various theories from professionals including psychologists, chronic-illness specialists and doctors. This literature is very rarely written from a patient’s perspective. So the question remains: where can you go to obtain strategies, tips and suggestions on navigating the hurt, fear and anger (just to name a few things) surrounding your diagnosis?

Below are some credible websites, forums, foundations and social media platforms that attract patients and caregivers living with PF. While these individuals are not experts in the field of medicine or chronic illness, others might argue that they are indeed experts on PF/IPF, since they are the people living directly with the disease.

MORE: Three professionals to talk to before traveling with PF/IPF

1. Pulmonary Fibrosis Foundation (PFF)
The PFF is one of the most well-known foundations committed to resources, research and patients living with PF. Within this website there is a PFF patient communication center, where support services are listed and information on how to join or start a support group in your area. With a brief overview of the foundation’s website, it is easy to see their commitment to supporting patients, caregivers and professionals in the PF community. This is a good place for individuals to start who are struggling with the initial diagnosis.

2. Pulmonary Fibrosis Facebook Pages
Pulmonary Fibrosis News, Pulmonary Fibrosis A Day to Day Survival to Breathe, and Pulmonary Fibrosis Awareness are just a few. There are also several groups by Breathe Support including PF Lung Transplant Support, PF Grief Support and PF Patient Support. While none of these social media groups are vetted or endorsed professionally, there is valuable information being shared between patients and caregivers. There are also international, or geographic-specific groups such as Pulmonary Fibrosis UK or PF India.

3. Canadian Pulmonary Fibrosis Foundation (CPFF)
This is another credible foundation dedicated to the support of Canadian patients living with PF/IPF. A valuable contribution of this website includes a peer-support program, provincially organized support groups, a patient support toolkit, a listing of medical professionals specializing in PF/IPF and much more. There is also information about current research, as well as links to other provincial sites with credible information, such as the Ontario or British Columbia Lung Associations.

MORE: Five fears about unemployment for pulmonary fibrosis patients 

4. The American Thoracic Society
While this website is more about patient education, research and clinical care, there are a number of patient resources listed including disease-specific information, for patients who have been diagnosed with a lung or pulmonary condition, but not yet identified.

5. Transplant Associations
Most patients diagnosed with PF/IPF are aware that there is no cure, and that one of the best forms of treatment is a lung transplant. There are a number of different associations specializing in lung transplant information, including American Society of Transplantation, The Transplant Society, NATCO – The Organization for Transplant Professionals or the Canadian Society of Transplantation. Many of these websites offer patient education and support for those who have endured a lung transplant, or who are preparing for transplant. They also offer events that bring people touched by organ transplant together to raise awareness, build friendships and create networks of support. Google “organ transplant associations” to find the one closest or most applicable to you.

6. Crisis Resources
Sometimes patients or caregivers of those living with PF/IPF need immediate emotional or psychological support, as opposed to informational support. Living with PF/IPF can be tiring, emotional and scary and at times it is helpful to know that there are online therapy associations or crisis resources that can provide help almost instantly. Some of these websites include Crisis Support Chat: Lifeline Australia, Online Distress Services: A Crisis Centre, IMAlive: An Online Crisis Network and Lifeline Crisis Chat: National Suicide Prevention Lifeline. There are also specific crisis intervention resources that are locally or geographically located, free of charge or online. While these aren’t likely to be long-term solutions, especially for dealing with issues pertaining to a life-threatening illness, they are sources of support available in the moment.

Navigating the many emotions, thoughts and fears associated with chronic illness can be scary, and it’s important to remember that you don’t have to do it alone. If you use a particularly helpful resource, please share it in the comments section below for other patients, caregivers and families.

MORE: Five tips for handling multiple medical appointments

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. Brian Burgess says:

    In England I have always considered myself healthy with a good diet and regular gym visits. Then I was told I had IPF and there’s no cure treatment is horrific and no support has been offered! A death sentence with no reprieve!

    • Charlene Marshall says:

      Hi Brad,
      Thanks so much for reading for your comments. I am thrilled that you found this helpful! I am also thankful to the other commenters as well who have added to the list I shared through my column. Thanks again!

      Charlene

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