What is livingwithidiopathicpulmonaryfibrosis.org?
livingwithidiopathicpulmonaryfibrosis.org is a dedicated patient-to-patient support community for patients and families affected by IPF. livingwithidiopathicpulmonaryfibrosis.org is powered by BensFriends.org, a group of patient support communities for rare diseases, and is run by volunteer moderators who have been affected with IPF.
Who can join livingwithidiopathicpulmonaryfibrosis.org?
If you or your family has been affected by IPF, consider livingwithidiopathicpulmonaryfibrosis.org your second home. livingwithidiopathicpulmonaryfibrosis.org, as well as the rest of BensFriends.org’s patient communities, is free for members to join.
What is Idiopathic Pulmonary Fibrosis?
Idiopathic pulmonary fibrosis (IPF) is a type of lung disease that results in scarring (fibrosis) of the lungs for an unknown reason. Over time, the scarring gets worse and it becomes hard to take in a deep breath and the lungs cannot take in enough oxygen.
IPF is a form of interstitial lung disease, primarily involving the interstitium (the tissue and space around the air sacs of the lungs), and not directly affecting the airways or blood vessels. There are many other kinds of interstitial lung disease that can also cause inflammation and/or fibrosis, and these are treated differently. It is important to work with your doctor to determine if you have IPF or another form of interstitial lung disease.
What is BensFriends.org?
In 2007, Ben Muñoz suffered a rare form of stroke caused by an Arterio-Veinous Malformation (AVM). He was unable to find the support he needed during the most difficult time, so he created an online support community AVMSurvivors.org to connect with others like him. AVMSurvivors.org led to the founding of BensFriends.org, driven to provide patient-to-patient support communities for people living with rare diseases.
BensFriends.org is a network of patient communities for people living with rare diseases. Launched in November 2007, Bens Friends provides valuable patient support by creating and running compassionate, responsive communities. BensFriends.org maintains dozens of patient communities and has changed thousands of lives. Bens Friends is supported by donations from its principals and community.