Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on COVID-19 and how precautions to protect ourselves from the virus, illuminates some of the habits rare disease patients face. In particular, Charlene discusses how people have now adapted to wearing a mask, obsessively washing their hands and cancelling social plans if they are ill; all of which are precautions patients with IPF have been taking for years.

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Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a study of real-world data from a registry of IPF patients in the UK. Ultimately, the study determined that changes in diagnosing and managing patients with IPF in the UK were occurring for the better, based on a review of the registry patients between 2013-2019. Vital improvements in patient care were particularly noted, and researchers indicated it is important to consider these improvements for the development of healthcare policies, impacting longer term outcomes.

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Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a study examining fine particulate air pollutants and acute exacerbations or flare-ups of IPF. The study looked to understand the risk factor associated with such pollutants and found that exposure to nitric oxide and PM2.5, a type of fine particular air pollutant does increase the risk of an acute exacerbation among IPF patients.

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Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote about her experience being vaccinated and wrongly thinking she could start giving hugs again. In particular, Charlene is longing to hug her nephews but now knows it’ll be a little longer until everyone is vaccinated and it’s safe to do that. She writes about how she’s angry at the pandemic from stealing her already-limited time with loved ones due to her diagnosis of idiopathic pulmonary fibrosis (IPF). This is true even for patients who are post lung transplantation.

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Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote about her experience, or lack thereof, with clinical trials as a young adult. She’s always excluded from participating simply due to her age, despite the importance of better understanding this disease in young people. Charlene wishes she could share what her experience with clinical trials have been when others ask, but unfortunately, she doesn’t have any to share.

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Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing recommendations from a data safety and monitoring board regarding the dose of treatment in the Galactic-1 trial GB0139. Once these recommendations are implemented, the study will continue to find an inhaled therapy effective in the fight against IPF, especially for those who are not taking Ofev or Esbriet.

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Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article from co-columnist Christie Patient about getting her COVID-19 vaccine early as a caregiver. Christie shares her guilt for being eligible to receive the vaccine ahead of others at higher risk, but then recounts the importance of everyone getting vaccinated to build herd immunity faster.

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Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a meta-analysis of patient-control studies to examine the increased risk of IPF from occupational and environmental exposures. It was found that exposure to pesticides, metal dust and wood dust increases the risk of IPF along with an occupational history of farming or agriculture or among those who ever smoked.

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Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote summarizing the virtual Rare Disease Day event BioNews recently offered. On top of a successful event, patients highlighted the importance of offering an event like this where rare disease patients are given the opportunity to come together, regardless of which disease they had. Charlene reflects on all the commonalities that exist among rare disease patients following that event.

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Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article highlighting a new device being used at Duke University Hospital to help improve the successful transportation of donor lungs to recipients awaiting lung transplantation. LUNGguard is a device of Paragnox Technologies and is being used to cold store lungs to extend time between harvest from a donor to transplantation, subsequently resulting in more lungs being available to patients.

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