Pulmonary Fibrosis Foundation
Pulmonary Fibrosis Foundation
The Pulmonary Fibrosis Foundation (PFF) mobilizes people and resources to provide access to high quality care and leads research for a cure so people with pulmonary fibrosis will live longer, healthier lives.
We are proud to serve as the leading patient advocacy organization of pulmonary fibrosis and are committed to funding research to find effective therapies and, hopefully one day, a cure.
The PFF's official KZread channel is brought to you by our sponsors at Boehringer Ingelheim and Genentech.
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very informative. thank you, a pulmonary fibrosis patient.
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 👊
Are those people coughing their heads off kidding? Learn to be considerate and at least cover your mouths or even leave the room!
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.
Thank you! Insurance needs to pay.
Did not do it for me.
Can you tell me whether stem cells can cure lung fibrosis?
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
My Dad is too sicl for a lung transplant.. Sucks
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
Very nice información
Excellent presentation - thank you to all.
Please improve the visuals..we see the Panel names more then the members . Yikes!
Excellent! Concise information to share with our family members and friends! 💚💙
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.
Thank you so much Dr osuma for saving me off from fibrosis ….
Thank you!
Thank you Dr osuma for your cure remedy against my fibrosis disease ...herbs are the besT
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.
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/
Thanks for posting these presentations. It would be helpful if the video editor would place "chapter" breaks between the various presenters.
+1
I’m currently trying to get this approved for my mom
How do I get on the list?
+1
Visit trials.pulmonaryfibrosis.org
How much time it will take and when will be the results
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
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.....
Mam the fibrosis pulmonary apicis, where from to conecxt my lungs
The people talking in the background was so annoying.
Thank you Dr osuma I just found out that I’m free from fibrosis!!
Very very informative . I thank you
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.
Maybe Certa will be hero and change this tragic situation. FT011 is in the fast track in FDA
Thank you, that was brilliant! Very helpful indeed!
Breaking News Nippon awarded exclusive rights to IPF treatment C21 in Japan. And thank you, Tom! Very encouraging regarding the O2!
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?
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
Is there any empirical evidence that the Covid mRNA vaccines cause Idiopathic Lung Fibrosis via autoimmune attacks from the body's own antibodies?
What happens to the bad lung if you only do one lung transplant? Does it die inside the body ? And can you feel it ?
Thanks for leaving comments on. It helps others
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.
Thank you!
Very well spoken and informative- ty
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.
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
How are you now?
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
coming across this video accidentally was like discovering a treasure, will certainly share all with my affected relative. Thank you all
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.
I don’t talk about it. My children don’t want to.
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!!!!
Love to those we lost. RIP mom
I have learned so much why my body acts
My husband found out few days back he has it. I'm so scared.
Great session.