Pulmonary Fibrosis Foundation
Pulmonary Fibrosis Foundation
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Taking the leap: Preparing for a lung transplant
A lung transplant is a major surgery and a huge life decision. At the PFF Summit, we held three separate sessions all about this very important topic. In this standalone session, you’ll get a one-hour overview of the lung transplant journey. For even more information about transplants, you can also check out the other two sessions, which is an additional 2 hours of expert presentations. Check out our CZcams channel!
zhlédnutí: 227

Video

Global View of ILD
zhlédnutí 279Před 19 hodinami
Pulmonary fibrosis knows no borders. In this PFF Summit session, join a panel of experts as they discuss how global climate change affects patients in climates all around the world, how treatment and diagnosis differs around the world, and much more.
Using supplemental oxygen
zhlédnutí 760Před dnem
Supplemental oxygen is one of the FDA-approved treatments for pulmonary fibrosis. In this PFF Summit session, you’ll get a complete overview all about oxygen, including usage and safety, and the different types available.
Pulmonary fibrosis research in the pipeline
zhlédnutí 346Před dnem
🔬🧬 Research, research, research. It’s one of the biggest themes at the PFF Summit. In this session, you’ll learn all about what’s currently happening in the field of pulmonary fibrosis. While this session in particular is a little more tailored for researchers and healthcare professionals, tune in anyway!
Improving pulmonary fitness for pulmonary fibrosis
zhlédnutí 830Před dnem
Ever wondered if you can exercise while living with pulmonary fibrosis? The answer is YES! In this session from PFF Summit, learn about pulmonary rehab and the importance of exercise when living with PF.
Get Involved! Advocating for better access to supplement oxygen
zhlédnutí 167Před 14 dny
Many people in the PF community struggle to obtain much needed oxygen. In this PFF Summit session, you’ll learn about the barriers people have faced, their stories, and how you can tell your elected officials to take action.
14 Navigating your social and patient assistance resources Full Session v2
zhlédnutí 98Před 14 dny
Insurance claims, specialty pharmacies, paperwork…. It’s confusing. 😵‍💫 In this PFF Summit session, join a panel of experts as they explain the healthcare systems and patient resources you should know about.
The future of clinical trials in ILD
zhlédnutí 455Před 14 dny
Pulmonary fibrosis research simply is not possible without patient volunteers. In this session from PFF Summit, join researchers as they discuss the results of interesting research studies. 💙🔬 And we love one of the points that Dr. Flaherty said about the participants PFF Registry - without them, some of the slides would have been blank. Courageous patient participation has helped us answer som...
Pulmonary fibrosis life expectancy
zhlédnutí 1,4KPřed 14 dny
One of the scariest results you get when you look up pulmonary fibrosis is a 3-5 year life expectancy. But is it true? In this video, Dr. Sonye Danoff walks you through this. She explains where this outdated statistic came from, how far we've come, and most importantly - that every single person with pulmonary fibrosis is unique.
Exercise, Education, and Pulmonary Rehab for Pulmonary Fibrosis
zhlédnutí 545Před 21 dnem
Did you miss our live webinar on exercise and pulmonary rehabilitation for pulmonary fibrosis? 🌬️ Don't worry! You can now watch the recorded session and gain valuable insights on how to manage your condition and improve your quality of life. In this webinar, we covered: ✅ The benefits of exercise for pulmonary fibrosis ✅ Effective pulmonary rehab techniques ✅ Tips on creating a safe and sustai...
Research: Be the change you want to see in PF
zhlédnutí 217Před 21 dnem
There is a TON of research underway for pulmonary fibrosis. Researchers have dedicated their careers to finding answers about this disease. In this PFF Summit session, we’re giving you an inside look about what the field of PF research looks like today. And as the title says, “be the change you want to see,” this session also explains why research NEEDS patient volunteers. ⚠️ Without you, resea...
Using Narrative Medicine to Understand and Live with Chronic Illness
zhlédnutí 361Před 21 dnem
Pulmonary fibrosis can be scary, and is often described in our community as a lonely disease. Telling your story can have a positive impact on your health and mental wellness. In this session from PFF Summit, you’ll listen to the stories from a physician and two patients in the PF community. Watch now!
Liquid Oxygen in under 3 minutes
zhlédnutí 439Před 21 dnem
Got three minutes? In this video, Dr. Sonye Danoff talks about different types of liquid oxygen for pulmonary fibrosis.
Survive and thrive post lung transplant: Part II
zhlédnutí 158Před 21 dnem
If you’re eligible to get one, choosing to have a lung transplant is a major medical decision. It cannot be taken lightly. In part two of this in-depth presentation from PFF Summit, you’ll get the second half of a complete overview of everything you need to know. We cover: 💊 Medications 🥦 Healthy lifestyle requirements 😷 Potential complications 🚫 Infection and rejection 💙 A story from a lung tr...
Survive and Thrive Post Lung Transplant Part 1
zhlédnutí 384Před 28 dny
If you’re eligible to get one, choosing to have a lung transplant is a major medical decision. It cannot be taken lightly. In part one of this two-session presentation from PFF Summit, you’ll get the first half of a complete overview of everything you need to know. We cover: 💊 Medications 🥦 Healthy lifestyle requirements 😷 Potential complications 🚫 Infection and rejection And so much more. Watc...
Use of Genetics in ILD
zhlédnutí 865Před měsícem
Use of Genetics in ILD
Living with pulmonary fibrosis in a COVID-19 world
zhlédnutí 449Před měsícem
Living with pulmonary fibrosis in a COVID-19 world
Disparities in ILD and pulmonary fibrosis
zhlédnutí 357Před měsícem
Disparities in ILD and pulmonary fibrosis
The caregiving journey
zhlédnutí 417Před měsícem
The caregiving journey
Life after loss and honoring your loved one
zhlédnutí 231Před měsícem
Life after loss and honoring your loved one
Your PF toolkit: Tips and Strategies for managing symptoms
zhlédnutí 1,4KPřed měsícem
Your PF toolkit: Tips and Strategies for managing symptoms
What's the difference? Palliative care, hospice, and end of life planning for pulmonary fibrosis
zhlédnutí 470Před měsícem
What's the difference? Palliative care, hospice, and end of life planning for pulmonary fibrosis
10 Beyond HRCT Full Session v2
zhlédnutí 638Před měsícem
10 Beyond HRCT Full Session v2
The PFF Registry and the Care Center Network
zhlédnutí 144Před měsícem
The PFF Registry and the Care Center Network
Understanding Pulmonary Fibrosis and Environment Impacts, Climate Change, Mold Risk Factors
zhlédnutí 494Před měsícem
Understanding Pulmonary Fibrosis and Environment Impacts, Climate Change, Mold Risk Factors
Introduction to pulmonary fibrosis and the Foundation
zhlédnutí 442Před měsícem
Introduction to pulmonary fibrosis and the Foundation
Pulmonary fibrosis clinical trials: Potential new treatments
zhlédnutí 844Před měsícem
Pulmonary fibrosis clinical trials: Potential new treatments
Clinical Trials Innovation Series: Potential new treatments for pulmonary fibrosis
zhlédnutí 1,4KPřed měsícem
Clinical Trials Innovation Series: Potential new treatments for pulmonary fibrosis
The critical role of federal agencies in pulmonary fibrosis research
zhlédnutí 238Před měsícem
The critical role of federal agencies in pulmonary fibrosis research
Step Up for a Cure: Join Us for the PFF Walk
zhlédnutí 360Před 2 měsíci
Step Up for a Cure: Join Us for the PFF Walk

Komentáře

  • @lorismith5369
    @lorismith5369 Před hodinou

    Most real talk shared by PFF! We need more like her…. FIND OTHERS! How can we help? 💚💙💚💙❤️

  • @iluvthekjv1611
    @iluvthekjv1611 Před 9 dny

    very informative. thank you, a pulmonary fibrosis patient.

  • @andrewbarker4992
    @andrewbarker4992 Před 11 dny

    I retired at age 50 due to this condition its also given me pulmonary hypertension the best advice I can give people is don't be afraid grab the bull by the horns the best way to face this is head on keep yourself strong workout as much as you're body allows do it often and breath deeply when you do it walk as much as you can multiple times a day even if you can only manage 5 steps do it you'll soon manage 10 then 15 if u can lift light weights believe me you're body and lungs will love you for it I've been doing this for 10 years now for I have bad days YES but I keep on lifting my weights and doing my very very short walks guys please don't make the mistake of telling yourself that you're ill and sitting in the chair all day long keep on punching 👊

  • @sess122
    @sess122 Před 12 dny

    Are those people coughing their heads off kidding? Learn to be considerate and at least cover your mouths or even leave the room!

  • @alannicholson796
    @alannicholson796 Před 12 dny

    Most enlightening. I particularly liked the last speaker and his motivation. I am going to try to incorporate some of his suggestions and advice. I am 80 still work part time. I always had a target minimum age of 100 but lately have questioned if that’s realistic. Time to believe it still is and do something to ensure I achieve it.

  • @studentaccount4354
    @studentaccount4354 Před 13 dny

    Thank you! Insurance needs to pay.

  • @barbaracowin1052
    @barbaracowin1052 Před 18 dny

    Did not do it for me.

  • @geetaprag3778
    @geetaprag3778 Před 18 dny

    Can you tell me whether stem cells can cure lung fibrosis?

    • @pfforg
      @pfforg Před 13 dny

      Beware of stem cell centers who are promising to cure or treat PF. There is no research that proves it works. Many of them are for-profit centers who are preying on people who have PF. Read more at www.pulmonaryfibrosis.org/researchers-healthcare-providers/clinical-resources/position-statements/stem-cell-cell-based-therapies-for-pulmonary-fibrosis

  • @whendis.roberts9903
    @whendis.roberts9903 Před měsícem

    My Dad is too sicl for a lung transplant.. Sucks

  • @whendis.roberts9903
    @whendis.roberts9903 Před měsícem

    Not a mistake to Google it as long as your looking at reputable websites. in College we havr do use Google gle amd we type in Pub Med or tye Mayo Clinic or N.O.R.D.......Reputable websites. We would fail College it we didn't do GOOGLE Search les for unto for our assignments. Where do your think We learn grom in College. Some is gro. Books and Some From Google. Hello

  • @user-mo4gs7gl9y
    @user-mo4gs7gl9y Před měsícem

    Very nice información

  • @kathrynmaguire8210
    @kathrynmaguire8210 Před měsícem

    Excellent presentation - thank you to all.

  • @lorismith5369
    @lorismith5369 Před měsícem

    Please improve the visuals..we see the Panel names more then the members . Yikes!

  • @lorismith5369
    @lorismith5369 Před měsícem

    Excellent! Concise information to share with our family members and friends! 💚💙

  • @janehuff1134
    @janehuff1134 Před měsícem

    I think people that give these talks should experience severe shortness of breath. I am in the severe stage of this disease and on 16 to 18 liters of oxygen and just started with Palliative Care and now need Morphine at times with my coughing. I don't want to lose weight by depriving myself of one of the few joys I have by eating.I am 45 pounds overweight and my doctors are okay with that.

  • @daisies4444
    @daisies4444 Před měsícem

    Thank you!

  • @user-kq7ji1os2v
    @user-kq7ji1os2v Před měsícem

    Thank you Dr osuma for your cure remedy against my fibrosis disease ...herbs are the besT

  • @sess122
    @sess122 Před měsícem

    Glad to see this presentation/technology. I was diagnosed with Sarcoidosis over a year ago after undergoing scans, tests, etc. There is scarring, some "stable" (lower lobe) and some "progressive" (upper lobe) from the Sarcoidosis. My question is related to the CAUSE of the Sarcoidosis and IF it's from inhaling "occupational" dust, materials, etc, wouldn't the "particles" possibly be visible in the lungs, which could then somehow be "addressed" more directly somehow? I'm just a layperson, so I apologize if my question is impossible to answer.

    • @pfforg
      @pfforg Před měsícem

      Hello! We may not be the right organization to discuss the cause of sarcoidosis. We recommend reaching out the Sarcoidosis Foundation or visiting their website at at www.stopsarcoidosis.org/

  • @billr8667
    @billr8667 Před měsícem

    Thanks for posting these presentations. It would be helpful if the video editor would place "chapter" breaks between the various presenters.

  • @joeg1816
    @joeg1816 Před měsícem

    I’m currently trying to get this approved for my mom

  • @magnetsa
    @magnetsa Před měsícem

    How do I get on the list?

  • @parampreetsingh1455
    @parampreetsingh1455 Před měsícem

    How much time it will take and when will be the results

  • @MikiBoleen
    @MikiBoleen Před měsícem

    stumbled on to this site. Diagnoised with IPFa year ago butan old CT scan looking fir cancer showed some fibrosis in 2011. Dont think it would have made any difference if had known.. i have been on oxygen for over a year now. Have to use the tanks-no portables, which is nusienceas imina wheelchair from polio

  • @whendis.roberts9903
    @whendis.roberts9903 Před měsícem

    Why doesn't anyone talk about the reason this is an older population Disease because alot of times when these People are exposed to Dangerous Inhalants....It takes years for the disease to Progress? Do you not want to help Prevent this???? Rediculas!!! You should be be screaming it from the rooftops to PROTECT YOUR LUNGS AT ALL COSTS!!!!!!!!!!!! DONT WORK WITH ASPESTOS,NUCLEAR WEAPONS, CERAMIC,METAL CUTTING ECT...ECT...ECT...UNLESS YOU ARE TOTALLY PROTECTED!!!!ALSO....PROTECT YOUR SELF FROM GETTING SICK AS THIS CAN CAUSE PULMONARY FIBROSIS AS WELLL.....

  • @batangpasawayofficial44
    @batangpasawayofficial44 Před 2 měsíci

    Mam the fibrosis pulmonary apicis, where from to conecxt my lungs

  • @denpat101
    @denpat101 Před 2 měsíci

    The people talking in the background was so annoying.

  • @ernestinejones8822
    @ernestinejones8822 Před 2 měsíci

    Very very informative . I thank you

  • @963ag
    @963ag Před 2 měsíci

    Hello, Doctor. I am a 60 year old woman, very health conscious, of normal weight, and have never smoked. I had a CT scan, actually for non- lung related issues. ( It was of the urinary tract and turned out to be non problematic.) But surprisingly, the results revealed that I have " multiple irregular streaky linear densities, fibrosis, atelectasis, and subpleural reticulation. ( In the bibasilar and basilar region ) I don't have a cough, am rather active, but noticed a little loss of stamina. As a young woman I worked with parakeets, cockatoos and chickens, I also had 2 rather severe bouts of pneumonia - one as a child, the other in my 30s. My oximeter is normal... I was referred to a pulmonologist, but in the meantime, wonder what is going on! Everything about fibrosis on the Internet is troubling - it mentions the median life expectancy, etc. Should I be worried? Thank you for a thorough and educational video.

  • @Daniel-uf1fq
    @Daniel-uf1fq Před 3 měsíci

    Maybe Certa will be hero and change this tragic situation. FT011 is in the fast track in FDA

  • @daisies4444
    @daisies4444 Před 3 měsíci

    Thank you, that was brilliant! Very helpful indeed!

  • @WAjustina
    @WAjustina Před 4 měsíci

    Breaking News Nippon awarded exclusive rights to IPF treatment C21 in Japan. And thank you, Tom! Very encouraging regarding the O2!

  • @WAjustina
    @WAjustina Před 4 měsíci

    Why is Tom the only one with O2 nasal cannula. I was told that I had IPF about 8 years ago based only on a PFT. F/u appt I was told IPF unlikely. No further diagnosis. Now I'm told that I DO have IPF based on O2 sat drop and heart rate increased during 6 min. walk. I have been on nasal O2 ever since. Is it possible to have oxygen discontinued?

  • @fordtrucklover90280
    @fordtrucklover90280 Před 4 měsíci

    My mom was originally diagnosed with Pulmonary fibrosis on 2016, she just passed away yesterday 2/24/24 so she lasted almost 8 year and 5 of these year without any medicine. This illness is not a joke, do not travel if you have PFF, a pneumonia caused her death while traveling outside of US

  • @imagine5311
    @imagine5311 Před 4 měsíci

    Is there any empirical evidence that the Covid mRNA vaccines cause Idiopathic Lung Fibrosis via autoimmune attacks from the body's own antibodies?

  • @drummikezwaaf
    @drummikezwaaf Před 4 měsíci

    What happens to the bad lung if you only do one lung transplant? Does it die inside the body ? And can you feel it ?

  • @cskiles318
    @cskiles318 Před 4 měsíci

    Thanks for leaving comments on. It helps others

  • @paulcarruthers2431
    @paulcarruthers2431 Před 4 měsíci

    The consultant said i have it but its not getting any worse. Im hopeing they diagnosed me wrong and its just scaring thats not gonna kill me im still lugging things around. Chopping trees down lugging concrete. But time will tell. In a way its a waiting game i was told i don't know how true it is it takes two years from diagnosis for you to start having affects from it it been a year and my lung function tests are showing normal. But i have got a cough but ive had that for 40 years. So now its a waiting game . One person said i should get a second opinion. I know we all have to die but i did want to die just yet.

  • @daisies4444
    @daisies4444 Před 5 měsíci

    Thank you!

  • @megastin7675
    @megastin7675 Před 5 měsíci

    Very well spoken and informative- ty

  • @waltercastro2015
    @waltercastro2015 Před 5 měsíci

    Can someone after Covid being diagnosed Pulm.Fabrosis. for 4 years, can the patient return to work? Even though he has recovered from using Supplementary Oxygen since 2021, no longer using it. His lungs are stable with scarring tissue. Docs still compare his studies to 2021. He can do limited physical activity due to having short breathing, with restrictions not to be exposed to harmful chemicals, dust, and or fumes. His job experience has been only housekeeping and school janitor. He was on the list for a transplant in 2021 after pulmonary therapy his lungs recovered with scar tissue, was cancelled.

  • @inaclarito-uy3ku
    @inaclarito-uy3ku Před 5 měsíci

    I was diagnosed with pulmonary fibrosis last Dec 2023 I didn't know where I got it .I did not got sick nor hospitalized not even diagnosed with pulmonary nor PTB I didn't drink liquor, not smoking.,where do think why I have this PF...thank you

  • @timdolan4591
    @timdolan4591 Před 6 měsíci

    Doctor Lee, Thank you for doing and sharing your presentation - I found it very informative. I am late to the comment party as you posted this video seven(7) years ago. If anyone is still around - question, please. I am reserving my questions to my specialist for really tough ones. Is Interstitial Lung Disease(ILD) the overarching respiratory disease, then under ILD are the known and Idiopathic Pulmonary Fibrosis (IPF) (unknown) causes of Pulmonary Fibrosis(PF) -?yes? similar to Alzheimer’s and dementia. e.g. Dementia contains Alzheimer's disease, Vascular, Lewy body, Frontotemporal, Mixed, Parkinson's disease….. I am confused if I have Idiopathic Pulmonary fibrosis (IPF) or ‘just’😊😊 ILD. In mid-November, I was diagnosed with ILD resulting in PF caused by cancer protocol R-CHOP (with MTX) and then afterward COVID. Reading some of the social media sites (yes - I shouldn’t) people seem to be using ILD and IPF interchangeably. Thoughts and thank you. Tim Dolan

  • @thepropertygurus4474
    @thepropertygurus4474 Před 6 měsíci

    coming across this video accidentally was like discovering a treasure, will certainly share all with my affected relative. Thank you all

  • @georgiamoyse1857
    @georgiamoyse1857 Před 6 měsíci

    I have just been diagnosed with pulmonary hypertension/fibrosis, so I am here to learn. Have to have a right/left heart catheterization before we can go further. I would say NO to transplant.

  • @WandaMartingaga
    @WandaMartingaga Před 6 měsíci

    I don’t talk about it. My children don’t want to.

    • @whendis.roberts9903
      @whendis.roberts9903 Před měsícem

      That's sad....I want to know everything that's going on with my Dad so I can best help him. Head in the Sand approach is NEVER EVER good!!!!

  • @letsgo214
    @letsgo214 Před 7 měsíci

    Love to those we lost. RIP mom

  • @WandaMartingaga
    @WandaMartingaga Před 7 měsíci

    I have learned so much why my body acts

  • @oldladybird8528
    @oldladybird8528 Před 7 měsíci

    My husband found out few days back he has it. I'm so scared.

  • @suepumphrey1559
    @suepumphrey1559 Před 8 měsíci

    Great session.

  • @Karai100
    @Karai100 Před 9 měsíci

    Do you really have 3-5 years to live ?