"Pulmonary fibrosis awareness month is very important to me because I lost my aunt to it and I am a lung transplant recipient because of it. I participate to bring awareness to the disease and the importance of it’s awareness to encourage testing, advocacy and foster community among all who are affected." Want to strike the lung pose and share your message with the PF community? Submit your lung pose at https://lnkd.in/ggXC3rY9
Pulmonary Fibrosis Foundation’s Post
More Relevant Posts
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🌞☕ Good morning! If you’re enjoying a morning cup of coffee or tea, then it’s the perfect time to tune in to “Coffee With America” with Dr. Amy Hajari Case and Sasha Rionda! In this TV segment, Dr. Case spoke about the symptoms and types of PF in recognition of Pulmonary Fibrosis Awareness Month. Watch now at https://lnkd.in/gB-DA3sf
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Today's Portrait of PF comes from Sandra. === I was diagnosed with IPF in December 2015. I was remaining stable on anti fibrotic meds until I contracted COVID in January of 2022. I rapidly deteriorated, leading to a double lung transplant in April of 2023. I was put on the transplant list at the end of March in 2023. One week later on April 5th. I received the call that a pair of lungs were mine if we could get to hospital in four hours. I remember the night when we got there waiting and waiting to see if the lungs were viable for me. One of the docs came into my room and said, “It's a go!” I still remember how calm I was. I am beyond grateful to my donor/family. Life is sweeter. I do not take for granted all the small meaningful things in my life. I’m able to walk and talk now without gasping for breath. Don’t lose hope. Find new things to replace the things you can no longer do. Keep yourself in the best possible shape you can. You may have this disease, but this disease doesn’t have you!
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"I participate in Pulmonary Fibrosis Awareness Month because I am living with Pulmonary Fibrosis. In 2021 I was diagnosed with pneumonia, R.A, Hashimoto, and pulmonary fibrosis on the bottom of both my lungs. I was already diagnosed with lupus and connective tissue disorder. All of these diagnosis rock my whole world. Learning I had pulmonary fibrosis was the scariest thing since I was told to start making arrangements with my affairs. I was told this disease has no cure and will progress. I have to sleep with 2 liters of oxygen and when I awake in the mornings it can take me awhile to get myself together because I am out of sorts. Despite all that I have going on, I am still here today with my family. Some days can be harder than others, but I am thankful to still be here. My hope is to advocate for those who don’t have a voice and when I don’t have a voice we continue to have this organization and they be a voice for me. " Thank you so much Windy for sharing your story and your lung pose with the PF community!
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Today's Portrait of Pf comes from Amy === I was living just in the throes of being diagnosed with a chronic autoimmune disease, scleroderma. I was going for comprehensive testing when out of nowhere, my results came back with me having scarring on my lungs — or pulmonary fibrosis. I was quite shocked. I didn't have symptoms at first for some time and it wasn't for about a year until I started to experience fatigue in my breathing while doing exercise. My life has been turned upside down. Every aspect of my life has been affected in some way, from not being able to work, to having to drop out of school because I couldn't get through my day. Advocating for my fellow illness communities really helps keep me in a positive mindset and allows me to use my voice to help others. My message to the PF community is that you can still be you! You might feel different, look different, or have different lifestyles; it isn't the end of your life. Coming out on top when you get to the other side is what is important.
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🔔 TOMORROW! 🔔 Join us for the PFF Walk - Chicago! 🏃♂️ Get ready to lace up your sneakers and walk together toward a cure! The PFF Walk - Chicago is tomorrow, and we can’t wait to see you there. The Chicago Walk offers two course options – 1-mile or 2-mile – through Chicago’s gorgeous Lincoln Park. After the Walk, we invite you to stay for a celebration with family-friendly activities and light refreshments. ⏰ Register now at PFFWalkChicago.org! #PFFWalk #PulmonaryFibrosis #TogetherTowardACure
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We need your help TODAY to get your members of Congress to cosponsor the SOAR Act! We ask for you to call your Senators and Representative today, even if you already have, to cosponsor the Supplemental Oxygen Access Reform (SOAR) Act to continue this movement for better access to supplemental oxygen. Congress needs to hear from you on how important supplemental oxygen reform is before they meet next week. The PFF needs you to take action on this timely request to secure as many cosponsors as possible to make sure that this legislation moves forward. In just a few minutes, you can make a huge impact on spreading awareness on the SOAR Act and speaking for the lung community. Review our step by step instructions here that outline the SOAR Act bill and how to call your members of Congress to advocate for this bill. Once you have made your calls, please submit our Call Report Form at https://lnkd.in/gdxbHsME to provide feedback on your experience. This is very helpful for us to know if the office is interested in being a cosponsor and/or is requesting any additional information. We look to you to help us get Congress’s attention on this issue and thank you for your continued support to make this bill law!
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Did you know that these diseases can cause interstitial lung disease? Interstitial lung disease is the umbrella term used for a large group of diseases with inflammation and/or scarring in the lungs, known as pulmonary fibrosis. 🔔 On September 18 at noon central time, join us for a very special webinar presentation with Dr. Sonye Danoff, pulmonologist and Co-Director of the Johns Hopkins ILD/PF Program. This year, the topic of ILD Day is the diagnosis. Dr. Danoff will talk about: 🔹 How doctors recognize the disease 🔹 Finding the right treatments for you 🔹 Your care team and the roles they have in your journey 🔹 Advocating for yourself ✅ Registration is open now at https://lnkd.in/gCgZKCHc ❌ Can’t make it? Register anyway, and we’ll provide you with a link to the recording. 💭 What is ILD Day? ILD Day is a collaboration between the PFF and eight other organizations to raise awareness of interstitial lung disease (ILD).
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