PF News & Perspectives

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on the importance of mental health, especially as the world begins to emerge from the COVID-19 pandemic.

Charlene recently reflected on where she was one year ago at this time; when she had just begun to seriously consider a mental health leave from her career. While things are better for her now, she’s seeing the impact of the pandemic on people’s mental health every day and she wants to remind everyone that it’s important to prioritize your mental health now more than ever.

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

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?

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

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote trying to better understand the relationship between asthma and IPF. Prior to being told she also had asthma, Charlene thought it was uncommon for the two to be diagnosed together.

Surprisingly, even if an IPF patient doesn’t have asthma, many use inhaled therapies such as Ventolin, to alleviate their lung disease symptoms.

As a patient living with IPF/PF: have you ever discussed asthma or asthmatic symptoms with your doctor? If so, what was done to alleviate them?

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

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a study looking at self-reactive antibodies and the effectiveness of Esbriet.

Many times, patients with IPF have an underlying autoimmune disease which may alter the effectiveness of one of the anti-fibrotic medications used to manage IPF. This study conducted in South Korea over five years suggests that if an IPF patient doesn’t respond to Esbriet, they should be re-evaluated for an underlying autoimmune disease.

As a patient living with IPF/PF: have you been diagnosed with an underlying autoimmune disease?

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

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote following a week of trying to manage new medications that weren’t helpful. Charlene felt frustrated and discouraged when her prescribed therapies weren’t relieving a sudden increase in shortness of breath and writes about where to turn when new medications aren’t effective.

Topping that list is connecting with other patients, which Charlene finds powerful and comforting; there is no greater source of information than from fellow rare disease patients.

As a patient living with IPF/PF: where do you turn when a newly prescribed medication isn’t helpful?

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

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing the events planned for 2021 Rare Disease Week on Capitol Hill. Amid roundtable discussions, policy updates and documentary screenings, patients and advocates will have an opportunity to win grants through the EveryLife Foundation for a rare disease organization of their choosing.

Check out all the action for this year’s Rare Disease Week on Capitol Hill on the EveryLife Foundations’ homepage.

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

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on the importance of emergency preparedness plans and communication.

Living with a life-threatening illness like IPF means emergencies can arise unexpectedly, but they can be a little less daunting if you do some work ahead of time in anticipation of them. Read more on how you can prepare for an emergency and why communication is key!

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

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on the power of sharing your IPF story and how stories, in general, can be a foundation for change.

Charlene is desperate to debunk the myth that young adults aren’t diagnosed with IPF, and she’s calling on fellow patients who fall in that age group to be vulnerable and share your story. It is our lived experience (and stories) that can be a catalyst for conversation and spark change for those living with this cruel lung disease.

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

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads the first piece from new columnist Ann Reynoso, where she shares her experience of being diagnosed with lymphocytic interstitial pneumonia (LIP). As Ann describes, there are a vast number of lung diseases and sometimes, getting an accurate diagnosis is difficult.

Listen Ann’s experience of noticing symptoms and how she managed to get her diagnosis of LIP and is now learning to live with it. Welcome to the PF columnist team, Ann!

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

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a collaboration between Vicore Pharma and Alex Therapeutics, focusing on the mental health of patients living with IPF. The newly designed app will allow patients to access artificial intelligence that can support their mental health needs, such as anxiety and depression, through the use of cognitive behavioural therapy (CBT). Having access to this resource at a patient’s fingertips could be transformative in helping them cope with their disease.

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