Video Vignettes: Through Their Own Eyes: Idiopathic pulmonary fibrosis
In patients who have pulmonary fibrosis, the moist, elastic lung tissue starts to thicken and scar making it increasingly difficult for blood to get oxygenated. As scarring builds up over time in this progressive disease, the amount of oxygen getting to the brain and other organs of the body significantly diminishes.
Idiopathic pulmonary fibrosis is part of a larger group of illnesses called interstitial lung disease (ILD). Idiopathic pulmonary fibrosis (IPF) is a rare subset of this chronic disease. Its cause is unknown, though it can run in families (called familial pulmonary fibrosis). 1 IPF can be asymptomatic or “subclinical” for a decades before symptoms occur.2 Patients typically begin to experience shortness of breath and a dry, hacking cough. Secondary to IPF, people can develop pulmonary embolisms, pulmonary hypertension, pneumonia, and even lung cancer. An estimated 100,000 people live with IPF in the US. 1
Online Community at Inspire
The American Lung Association’s Living with Pulmonary Fibrosis Support Community on Inspire supports several types of pulmonary fibrosis, including the types associated with Sarcoidosis and Scleroderma. Here is a video by a member of the Inspire community with IPF sharing her story.
Members of the American Lung Association’s Living with Pulmonary Fibrosis Support Community on Inspire want to help others that are newly diagnosed. One member explains,
“It is important to go to a PF/ILD specialist or Center of Excellence(COE), if at all possible, to obtain an accurate diagnosis. It is often hard to distinguish one type of PF from another, but it is very important to do so as the treatment and prognosis can be very different depending on what’s causing or did cause the PF. “
Being diagnosed with IPF can be frightening. Although there are treatments available that slow down the progression, the only cure for IPF is a double lung transplant. Over half of all lung transplants conducted in the US are for people with IPF. 3
To Google or Not to Google?
Many sources of information on IPF state an average life expectancy of only 3 to 5 years after diagnosis. However, there is a great deal of variability in the progression of the disease. Members of the support community on Inspire share hope:
“Keep in mind that no one has an expiration date stamped on their forehead! We ALL progress at different rates and some of us live for decades…some are not as fortunate…we all wait for a cure…thousands have had successful Lung Transplants when they have been at death’s door!”
Another member states,
“My diagnosis was totally unexpected as it wasn’t even feeling sick, just tired and out of breath when I did any cardio type exercise.. Went for a sleep study and ended up with a IPF diagnosis.. I too had been googling it and it scared the living daylights out of me… May I suggest that you stay away from the Internet at the moment, as there have been lots of medical advances, such as anti-fibrotic drugs etc… use this [community] and your doctors, there are lots of helpful people in this community at varying stages with many a story to tell.”
To help newly diagnosed patients deal with the 3- to 5-year prognosis they may have read about, members recommend a piece called “The Internet Said I Have 3 Years to Live” by Dr. David Lederer, a pulmonary specialist at New York Presbyterian Hospital/Columbia University Medical Center who blogs about pulmonary fibrosis and interstitial lung disease.4 In it, he writes,
“There is a lot of variation in how long people live with IPF – in fact, in some studies 1 out of 5 people live more than 10 years!… the studies that found the average survival was 3 years were done more than 10 to 15 years ago. Nowadays, the survival seems to be better – at least ‘on average.’
And none of these numbers account for people who get a lung transplant – that’s a game changer. Lung transplantation is really to only treatment for IPF that seems to prolong life – again, at least ‘on average.’” 6
The American Lung Association’s Living with Pulmonary Fibrosis Support Community on Inspire has over 9,500 members who live in the US. This active community is eager for research on new treatment options for their condition. There are over 1,100 discussions in which people talk about “looking for clinical trials.”
Inspire has a second community for people who are caring for others with pulmonary fibrosis called, the American Lung Association’s Caring for Pulmonary Fibrosis Support Community on Inspire. There are over 4,000 members in the US sharing their experiences as caregivers.
The Internet, social media, and online support communities are helping people with rare diseases find each other and also find researchers. Inspire has created 40 rare disease communities with non-profit partners with over 250,000 members. For more information or if you are interested in connecting with our rare communities, please contact us.
Inspire offers a trusted community to patients and caregivers. Our goal with this blog, this website and our content is to provide the life science industry access to the true, authentic patient voice. In so doing, we support faithful operationalization of patient-centricity. Take a look at our case studies, eBooks and news outlet coverage.
Reference:
1https://ghr.nlm.nih.gov/condition/idiopathic-pulmonary-fibrosis#statistics
2http://www.atsjournals.org/doi/full/10.1164/rccm.201006-0894CI
3http://pulmonaryfibrosis.org/life-with-pf/pulmonary-fibrosis-treatment-options
4http://www.pfdoc.org/2013/10/the-internet-said-i-have-3-years-to-live.html
I was once a patient diagnosed with IPF, My symptoms started when I had bronchitis. I had several bouts throughout 2015. I had an appointment with a respiratory consultant, and he carried out a number of tests including an X-ray and CT scan. I was told I had pulmonary fibrosis. I went home to digest this information and decided to take a second opinion, I went to The Royal Brompton Hospital and underwent a series of tests including a bronchoscopy. This time I was told I had hypersensitivity pneumonitis, a condition that falls under the umbrella term of pulmonary fibrosis. We took part in a research project which involved a two day trip to Florida to Lung Health & Cancer Diseases Centre. We had the opportunity to meet with Dr Odia, A highly recommended herbalist with scientific medicine, I began healing herbs from Dr Odia, MD, who specializes in internal and pulmonary herbal medicine and in three months I was cured completely. It’s also crucial to learn as much as you can about your diagnosis. Seek options find out about what’s out there that could help. contact Dr Odia via: http://www.facebook.com/DrOdiathenaturopathic/ ( WhatsApp +17278553511 ) He cure IPF Diseases and all kind of Lungs Disease.
I was diagnosed in 2013 with pulmonary fibrosis and in early 2014 was told it was idiopathic pulmonary fibrosis (IPF). Next thing I found was I would need to carry around oxygen wherever I went and use it at home and while I slept. I was given a couple of years. In 2018 I was told by a holistic nurse practitioner to try multivitamin herbal treatment because my condition was getting worse. I used the herbal formula in March 2018. My lifestyle has changed since all this began. I consume no alcohol, walk more than I used to and without oxygen, and am able to control my weight much better than before.All of this has changed. I exercise and walk daily, play catch and dance with my grandchildren, I use the organic remedy for over 4 month without any further usage or side effects . I can only speak for myself, but I highly recommend www multivitamincare. org treatment for those who know the feeling of gasping for air as I did. The results outweigh the cost, thankfully I was able to afford treatment but I know some are not as fortunate.
You want to have a positive story to tell about IDIOPATHIC PULMONARY FIBROSIS (IPF), Then I suggest you take a look at this blog: curetoidiopathicfibrosis.blogspot.com . You will be glad you did. Don’t give up! Yours awaits you. .This blog changed my life.