Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing the review request for Tyvaso DPI to be used in patients with pulmonary arterial hypertension (PH) and PH associated with interstitial lung diseases (ILDs), including those with IPF.  Tyvaso is currently approved by the Food and Drug Administration in the US, however, the examination of how  an inhaled form of Tyvaso (Tyvaso DPI)  might better assist patients with PH and PH-ILDs is currently under way by United Therapeutics.

If you have ILD-induced pulmonary hypertension, have you ever spoken to your doctor about Tyvaso?

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FDA Accepts Priority Review Request for Tyvaso DPI

Being on supplemental oxygen doesn't mean you have to avoid the hot summer months entirely. Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall shares some useful tips about this subject.

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How to Make the Most of Summer Despite Pulmonary Fibrosis

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a study out of the University of Southhampton in the UK regarding hyperbaric oxygen therapy and how it may benefit patients with IPF. 

The investigators first applied their research to mice models and are theorizing the application of their successful findings to human lung tissue, and how this hyperbaric oxygen could be a “life-changing” therapy for those living with pulmonary fibrosis. 

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Hyperbaric Oxygen Therapy Studied as Potential Therapy

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a piece from co-columnist Ann Reynoso regarding the retirement of her husband and her anxieties surrounding how to care to for her family financially. 

Chronic illness adds a layer of extra financial stress, especially when one partner is unable to work due to their disease and as we all know (and Ann shares): bills don’t wait. Read Ann’s story about how she is planning for retirement despite being anxious and what she’s doing to make the process easier on herself. 

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Planning for Retirement Despite My Anxieties

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a news piece on the 2021 PFF Summit, being held virtually this November. 

As a past attendee at the Summit, Charlene can speak personally about how beneficial the networking opportunities and educations are and encourages others to attend if they are interested and able. This year’s Summit will be focused on research and quality of life discussions and presentations, and are aimed to educate patients, caregivers and healthcare professionals alike. 

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PFF Summit Will Focus on Research And Quality of Life

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on the ups and downs that many patients with a chronic illness experience. It can be difficult to manage the ebb and flow of being healthy versus sick, and Charlene wants to remind people that they aren’t alone. Life isn’t a linear journey, especially for those with a chronic illness so remember to cherish the times you feel well and hang on tight when you’re not; things will get better.

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Life With Chronic Illness Brings Both Highs and Lows

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a research study being conducted by a University in Japan and the US on a subset of fibroblasts that was found to prevent fibrosis in a mouse model. This 2021 study, which produced observations that demonstrated promising anti-fibrotic properties, hopes to promote a better understanding of IPF and lead to the development of novel therapies for lung fibrosis.

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Specific Fibroblast Cells Prevent Fibrosis in PF Mouse Model Study

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on navigating controversial conversations, which is never easy, especially with people you love. Recently, Charlene has noticed a shift in controversial conversations from mask-wearing to vaccines; both things she believes in strongly to curb the spread of COVID-19. Charlene is interested in how you navigate difficult and controversial conversations with people you love, who have opinions that simply differs from yours. Please share your thoughts in the Pulmonary Fibrosis News forums! 

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Controversial Conversations: A Chronically Ill Patient’s Perspective

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a European survey that was examining patients’ diagnostic experience. Expediting time-to-diagnosis is top priority for many researchers, advocates and clinicians alike, as an earlier diagnosis is liked to better outcomes among PF patients. Despite this, some patient’s wait a year or longer to be diagnosed. This survey highlights gaps in the diagnostic process through asking patients about their experience, while also seeking to understand what would make the process easier for them. 

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Many Wait a Year or Longer for PF Diagnosis, Survey Finds

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a database study out of West Virginia University, examining the effects and risks of COVID-19 on IPF patients. The study compared non-IPF and IPF patients,  with the latter patient population experiencing poorer outcomes, critical care need and higher hospitalization rates. Therefore, IPF patients are urged to continue being cautious and take precautions about COVID-19.

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Serious Mortality, Ventilation Risk Seen in IPF Patients With COVID-19

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article exploring the effectiveness of Metformin, a well-known diabetes medication, on silica-induced PF.  

Following the publication of a 2018 study on Metformin reducing established lung fibrosis, a team of researchers in China are now evaluating the anti-fibrotic effects of this medication in an induced mouse model. They are hopeful that the findings may encourage the exploration of an inhaled form of Metformin as a potential therapy for those living with PF.

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Metformin, for Diabetics, Effectively Treats Models of Silica-induced PF

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote about typical trajectories of life and how IPF unapologetically interferes with that. 

As a young adult, Charlene has recently acknowledged how much her disease has forced her hand in what she prioritizes, which includes travel as opposed to marriage or children. This is because IPF is unpredictable and cruel to the patients affects and has significantly altered the typical trajectory of young adulthood for Charlene. 

Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com

Pulmonary Fibrosis Alters the Trajectory of Our Lives

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a guidebook recently released by The National Alliance for Caregiving and Global Genes. 

This resource is written for caregivers from caregivers, with the hope of helping others know they aren’t alone. This comprehensive guidebook is free for caregivers and is called “The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses”. 


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‘Not Alone in the Dark’: New Guide for, by Caregivers of Children With Rare Diseases

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a piece from co-columnist Kevin Olson, highlighting his experience with his wife contributing to an awareness campaign called “30 Days of PF”. 

Kevin’s wife Dana recounted her experience as a caregiver through an IPF diagnosis and lung transplant, which naturally, was different than that of a patient. Kevin shared that discussing this experience with his wife and understanding her perspective of his IPF journey brought them closer together. 

Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com

My Wife Shares Her PF Story

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing the first Interstitial Lung Disease (ILD) Day coming up September 15th. The event will be focused on raising awareness about ILDs, of which PF is one, and subsequently hoping patients are able to be diagnosed faster. This first-ever event is a collaboration between various patient and advocate-driven organizations connected to the ILD community, including PF Warriors and the Wescoe Foundation for Pulmonary Fibrosis.

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Patient Groups Team Up to Create First ILD Day on Sept. 15

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on the importance of choosing friends who are supportive, despite your struggles as a PF patient. Like all chronic illnesses, dealing with IPF is difficult and there is a lot to manage physically, socially and emotionally. These struggles are made easier with friends who support the habits and routines that reduce IPF symptoms and encourage healthy living, caring not only for a patient’s physical health but mental health as well.

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Choosing Friends Who Support Healthy Habits as an IPF Patient

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing an interview with Marcella Debidda, President of BioNews Clinical. This is a new division of BioNews Services focusing on connecting patients with rare and chronic diseases to clinical trials with a focus on amplifying their voice in the process of participating in clinical trials and designing future studies. 

BioNews Clinical launched on September 7th and is focusing on a pilot study for those with IPF. More information can be found on https://bionews.com/clinical-trial-services/

Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com

BioNews Clinical Will Bring Trials Into ‘Continuum’ of PF Care

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a piece from co-columnist Emma on her Mom’s recent morale boost, which was a visit from her grandchildren just over 1 year post lung transplant. 

As Emma describes, her Mom wasn’t certain she’d even get to meet her third grandchild after being diagnosed with IPF and requiring a lung transplant. Then amid COVID and isolation to protect her new lung, Emma’s Mom Diana had to remain vigilant with social distancing. Recently, she had a visit with her grandchildren, which Emma describes as a healing power of joyful distraction! 

Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com

The Healing Powers of Joyful Distraction

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing the intentions of a new institute, which aims to leave no rare disease patient behind. 

The Institute for Life Changing Medicines is paving the way for pharmaceutical companies and others to make drug development and distribution more accessible for rare disease patients – many of whom have the largest therapeutic need, but are often left behind when it comes to therapies for their rare disease. 

Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com

New Institute Aims to Leave No Rare Disease Patient Behind

Pulmonary Fibrosis News is committed to creating a 24-hour news cycle of the latest science and research news related to addressing PF. While there is a great deal of research going on right now for treating and eventually curing PF, that news is rarely reported. Our team of writers and editors are proven professionals in the science and research fields who are committed to sourcing and presenting new research news in a format that patients can easily understand.

New tracks tagged #Living with PF