Pulmonary Fibrosis Association of Texas has helped me whenever I have questions, need support, want to advocate for legislation to improve, promote, create awareness to the public, legislators, health care providers, doctors and family members. Time is now to reintroduce Pulmonary Fibrosis Research Enhancement Act contact you House of Representatives, Senators, anyone and everyone. Pulmonary Fibrosis literally TAKES YOUR BREATH AWAY. Sadly PF was cited as a disease to be included in funding, however it was not included when final funding was approved. Houston is the opposite side of Texas from where I live in El Paso. One person will make a difference, everyone together wil be the difference. Thank You, Karl Kingan P.S. PF has no cure no treatment no funding and is a progressive disease with the only hope of living each day to the best of your ability everyday realizing that limits to what you can and can not do are our future for tose of us who have this disease and those that will be diagnosed in the futuree unless funding is found to at least find some to halt if not reverse the progressive scarring of the lungs which occurs. If you have Idiopathic Pulmonary Fibrosis at best your life expectancy is 5 years. Some live longer other people die sooner. Take a DEEP BREATH and realize how precious it is to be able to breathe.
WE WHO HAVE PULMONARY FIBROSIS TRY OUR BEST TO MAKE THE MOST OF EACH PRECIOUS BREATH.
Diagnosed with scarred lungs April 17, 2010 after having tests done by my Pulmonologist, this is where I go to information, support others, share my stories hopes nad concerns. My doctor said to wait six months. I was glad to hear that their response was SIX MONTHS!!!!! My goodness I said WhazUp indeed. They have offered to help support encouragement and to help me get a second opinion. i want to start a Pulmonary Support group here in El Paso, Texas with teir help.
Help to pass the Pulmonary Fibrosis Research Enhancement Act contact your Senators & Congressmen/women. pulmonary disorders are the third largest cause of death in the United States.
When my wife, Barbara, was diagnosed with Pulmonary Fibrosis, we looked for information concerning the disease. What little there was available painted a dark picture of her future. Looking for help in understanding her condition we eventually discovered the Pulmonary Fibrosis Association and began attending their meetings. To find others with the same inexplcable problem, to hear them speak of their experience, their embracing us as one of their company took a great deal of the weight of the fear off our shoulders. Barbara loved Jan and John and her fellow sufferers. Since she passed away in 2008, I have continued attending the meetings and volunteering in whatever way I am able to assist. It is a great organization, great leaders. May God bless their efforts.
My Mom was diagnosed with PF in 2002, at the time there wasn't any information out there for her other than this is a disease that is going to take her life with in 2-3 years. We have been blessed she is still with us and has formed this non-profit with the help and support of many other patients. PFAT isn't just raising awareness but it is providing an extra breath for patients who would have otherwise suffocated. Other non profits are doing great work raising awareness for the disease but to my knowledge are doing very little for those with it. I am extremely proud of my Mom, who has been terribly ill but manages to push through her illness to help those less fortunate who cant afford oxygen or are new to the disease and have endless questions as we had when she was diagnosed. Now there is some place they can go for information. I thank God for the patients and family members of those who are no longer with us for donating there time to form this non profit organization.
My mother was diagnosed with Pulmonary Fibrosis in April 2007. I had never heard of PF and there wasn't much information out there. I was scared and confused. My mom moved to Houston in January 2008 and found the Pulmonary Fibrosis Association of Texas (PFAT) soon after. I decided to attend a meeting to see what it was all about and perhaps get some information on the disease. The support group was a wonderful group of people, both caregivers and patients, either with the disease or post transplant. I got a lot of information and more importantly support from everyone there. They shared their experiences and assured me that both myself and my mom were not alone. My mom passed away in August 2008 and soon after I became more involved in PFAT. I am now a Board Member and volunteer as much as I can. This organization is so important to those suffering from PF. Not only does the support group help, but the organization gets them oxygen, medication, and medical equipment that they need to survive. Jan and John Orndorff, who founded PFAT, work tirelessly and constantly to assure that no one is denied oxygen. I am proud to be a part of PFAT!
In 2002 we were personally faced with a diagnosis we had never heard of, Pulmonary Fibrosis, and worse we understood it to be very rare and as if we were the only family within thousands of miles living with it. We were told the disease is terminal and has no treatment or cure and that we may have two to three years life expectancy. We felt very alone and had many questions but no where to turn for answers. A few months later we met another patient, by accident, and decided if we were so happy to meet, other patients must be looking for the same thing...answers, encouragement and hope. Step One: We started a Support Group and people came and are still coming seven years later. About the third year we started getting calls from across the country, patients being turned down for oxygen because they no longer had health insurance or funds to pay for the air they needed to live. It is never OK for a human being to be denied the oxygen they need to breathe. We began searching for providers of oxygen for patients in need and when necessary the organization funds it for them. We help them work with their oxygen companies to understand their billing and to get more useful oxygen equipment to use when they leave home. Step Two: Members of the Support Group worked hard to help develop and prepare the paperwork necessary to file for Non Profit Status. Within two weeks of submitting the application we were approved and received our 501(c)(3) status paperwork and invited Physicians to participate as an Advisory Board. Eight weeks later we hosted our first annual Golf Tournament to Benefit Pulmonary Fibrosis patients. We continue to find avenues to raise funds to assist PF patients in need get hope, support and the education they need to fight their battle. To the very last days of a patients life, we will provide what healthcare equipment we can, hold hands and listen as best we can. Patients walking out of a Support Group meeting have been heard to say "I learned more in two hours than I have in two years" and we have seen many people walk in as frightened new members then leave as encouraged and empowered patients with new friends. Every simple 'Thank You' from a family strengthens our resolve to help and be there for more PF patients walking this path. Pulmonary Fibrosis takes the lives of more patients each year than Breast Cancer and continues to grow. We are working hard to raise awareness, educate, provide and be there for the next new patient diagnosed with a disease that still takes our breath away.