September is Global Pulmonary Fibrosis Awareness Month, and Pulmonary Fibrosis NOW! encourages its members to unite and help educate their communities about this disease and all that is being done to fight it.
Pulmonary Fibrosis is a lung disease that occurs as a result of lung tissue becoming damaged and scarred, which inhibits lung function and leads to progressively increased shortness of breath. Pulmonary Fibrosis is commonly diagnosed as being idiopathic, meaning that doctors are unable to pinpoint exactly what led to its onset. Oftentimes, Pulmonary Fibrosis scarring can be caused by a variety of factors. Unfortunately, the lung damage that is created by Pulmonary Fibrosis cannot be repaired; however, there are a multitude of medications and therapies that patients can incorporate in order to help manage symptoms and improve quality of life, including alternative therapies, breathing exercises, and practicing preventative measures.
Lifestyle tips for those living with Pulmonary Fibrosis:
- Stay active
Set goals to stay motivated and healthy, and stick to them! By creating a plan and exercising regularly, patients can help ease their symptoms and feel better both physically and emotionally. Activities could include walking on a treadmill, riding a stationary bike, stretching and light weight training. Just make sure to avoid over-strenuous activities and build strength slowly. Sounds like a win-win situation if you ask us!
- Use oxygen if needed
For some patients, incorporating more oxygen into the body will not only help with breathing, but will also help them remain active. If you suspect your oxygen levels are low or your oxygen saturation measurement readings run low on a frequent basis, supplemental oxygen therapy may be needed. Your doctor can determine if supplemental oxygen is needed through a series of tests that test your oxygen levels at different activity levels, such as when you’re resting, walking or sleeping. From that point, providing supplemental oxygen and determining the cause of low oxygen saturation will be the primary treatment goal. Using supplemental oxygen at night, if required, may also help improve sleep, so you are well rested and able to do more. Click here to learn more.
- Seek support
Being diagnosed with Pulmonary Fibrosis can be a scary and isolating experience, and the same is true of those who have a friend or family member living with the disease. Having to witness this process in a loved one can be terrifying and often leaves one feeling the need to do something to help — but without the knowledge or tools to intervene; It is important to remember that you are not alone, and it is okay to reach out for support. Whether it be about your experiences, hardships, or progress, don’t hesitate to speak up and share your concerns with those around you, including loved ones, support groups, and healthcare professionals.
- Be your own advocate
You may have not realized, but every time you speak up for yourself or others, you are an advocate… So why not advocate for PF? Learn, analyze, and ask questions to not only help yourself, but those around you as well. Education and communication are two of the most important ways to advocate for your cause, so get out there and make your mark; you never know whose lives you could be positively impacting. As a friend or family member to someone living with Pulmonary Fibrosis, you are an important advocate when it comes to their diagnosis and treatment. You may even be asked to attend appointments, visit them if they are hospitalized and so on. These are important moments to ensure their wishes are heard and included in their care. These are just some of many examples when it comes to providing support and advocacy.
- Keep yourself educated and do your research
With the internet at your fingertips, it has become so much easier to find information and stay in the loop, so take advantage! Find out more about Pulmonary Fibrosis, and stay informed on what matters most to you. Speaking of research and education, below are a few examples of new research findings that have taken place as the result of multiple Pulmonary Fibrosis studies on symptoms, progress towards finding a cure and improving the lives of patients.
Researchers in Berlin have been studying the development of Pulmonary Fibrosis, as published in Nature magazine. Their research has shown that the loss of a key protein in the body significantly impacts the development of chronic progressive lung disease. Scientists at the Vanderbilt University Medical Center and the Translational Genomics Research Institute in Phoenix, Arizona, have discovered changes in genes and cells in the lungs of people with Pulmonary Fibrosis. What does this all mean? It means that researchers will now be able to develop new therapeutic approaches for patients. Researchers have also been working to figure out which cells are actually creating fibrosis in the lungs, and their findings have been reported July 8, 2020, in the Science Advances journal. This new information is helping them gain insight and work towards a possible cure.
At Pulmonary Fibrosis NOW!, our focus is on researching natural, supplemental and alternative therapies for treating Pulmonary Fibrosis. We are currently conducting research on the effect of systemic enzyme supplements on symptoms and quality of life in patients with PF. The preliminary results from this questionnaire-based study which examined the effect of serrapeptase and nattokinase supplementation on breathlessness, mental health, activities of daily living and overall health in patients with PF are promising. Based on these results, we are planning a larger study where we will also examine the effects of systemic enzyme supplementation on clinical parameters including oxygen saturation, lung-function and extent of lung fibrosis.
Given the unfortunately increasing prevalence of Pulmonary Fibrosis in patients, especially as a result of the onset of COVID-19, ongoing research is critical to the future of the disease and finding new ways to provide relief as well as a possible cure. As the pandemic progresses, the long-term effects on patients who recover from COVID-19 includes Pulmonary Fibrosis. With the numbers on the rise, it is imperative to maintain a strong immune system, exercise, and take preventative measures as it is more critical now than ever. One of the best ways to spread the word about Pulmonary Fibrosis is through social media interactions. Find us online on Facebook and Twitter, and use the hashtag #FightPFNOW to start getting social!
To connect with others who have or are impacted by PF, join our online community forum, and attend our virtual support groups on Zoom.
Leave a comment