Idiopathic pulmonary fibrosis

PatientsLikeMe creates largest open registry of IPF patients in the world

Idiopathic Pulmonary Fibrosis, Pulmonary fibrosis / By

Community One of Website’s Fastest Growing; Reveals Real-World Picture Of Daily Life With the Rare Lung Disease CAMBRIDGE, Mass.— August 22, 2013—In a few short months, PatientsLikeMe has created the largest open registry of idiopathic pulmonary fibrosis (IPF) patients online, and some of the most current patient-reported data on the disease. The information the community has shared is providing new clues about the condition and giving a rare look into what it is like to live daily with a disease that has no known cause or cure. According to the National Institutes of Health, pulmonary fibrosis causes scarring in deep lung tissue over time, making it harder for the lungs to move oxygen into the bloodstream. Cases where the cause of the disease is unknown are called IPF and usually affect middle-aged and older adults, more typically men, and an estimated 100,000 people in the United States. The company’s focus on IPF accelerated earlier this year when it announced a collaboration with Boehringer Ingelheim to enhance its IPF patient community. Now more than 900 IPF patients use PatientsLikeMe to monitor their health and share information about their experiences with the condition. They can also connect with others like them and …

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“My new normal.” PatientsLikeMe member Jeff tells his personal journey with interstitial lung disease

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Have you met PatientsLikeMe member Jeff, also known as NinerFan? He has been living with interstitial lung disease (ILD) since 2004 and he recently took some time to share his journey with us. He spoke about everything from getting diagnosed to being a newlywed, and gave a great list of advice for others going through a similar health experience. In Dec 2004 we decided to move to another apartment and I was becoming so short of breath I couldn’t take it. I was 37 and had gotten into the best shape of my life that year, so I knew that there was something wrong. I was getting night sweats and coughing, so I figured maybe bronchitis or something. My primary care physician (PCP) sent me for X-rays and they came back abnormal, not really viable because I could not take deep enough breaths, so I went for a CT scan. That’s when I first heard the term ILD and I was scheduled to see a pulmonologist. I did some web searching and got really worried. A week later the pulmonologist was arranging a biopsy. I didn’t understand why, but we did it. I had my case sent to a specialist at …

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“Retooling my attitude.” An interview with idiopathic pulmonary fibrosis patient & PatientsLikeMe member Lori

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As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Lori, an idiopathic pulmonary fibrosis (IPF) patient who started blogging about her journey back in October 2011. Her blog is called Reality Gasps and she balances stories of her daily struggles with dashes of humor that can make anyone smile. If Lori sounds familiar to some of you, it’s because she’s also part of the PatientsLikeMe community.  She recently took some time to talk with us about why she started blogging, the difficulty in finding a diagnosis and how connecting with others has positively impacted her life. What made you decide to start blogging about your experience? What’s been the community response? When I was first diagnosed with IPF, I started researching online (like everyone else). The medical sites gave me an idea of what was happening to my body, but they said nothing about how to live with this disease – and when I really thought about it, that’s what I needed. So, I turned to blogs written by other patients and caregivers. They were …

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Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round”

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Over the last few months, Keith and Sarah have been sharing their journey with us. In this final interview of our three-part series, they talk about how he got on a transplant list and their “phones at the dinner table” policy. If you missed our first two interviews with Keith and Sarah, you can find them here. What did you have to do to get on a transplant list? Did you have to meet certain criteria? [Keith] The transplant assessment process is an intense and very time-consuming one. When you are contacted about being assessed for transplant, you are sent a large envelope listing out a weeks worth of testing, doctors visits, and appointments in Toronto at Toronto General Hospital. The hospital evaluates you on many things, and ultimately if you are deemed “healthy” enough (because you can actually be too sick, or too healthy) as a result of this testing, you are placed on the list. There were psychological assessments, nuclear cardiac testing, liver testing, kidney testing, pulmonary function testing, physical testing, blood tests (LOTS of blood tests) to name a few. Can you talk about your “phones at the dinner table” policy and how it changed? [Sarah] Phones …

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Keith & Sarah’s personal journey with rare lung disease. Part II, “Lungies”

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In this second interview of our three-part series, Keith and Sarah talk about how their daily lives changed and the importance of connecting with others. If you missed our first interview with Keith and Sarah, you can find it here. What were the most noticeable changes you had to make in your daily life? [Keith] My ability to enjoy time with family was impaired because I could no longer be active with my children or my wife. I could not work because when I tried to do the simplest task, I became out of breath. I could no longer carry a toolbox, go up a set of stairs, or do everyday tasks at home without becoming winded and requiring rest. I wanted to rest all the time and was never comfortable. As a caregiver, what things could you do to help Keith the most? [Sarah] Keith eventually got to the point where he needed me for many personal tasks as well as taking care of all of the home tasks. I showered him, and took over our business, and we hired a cleaning service every two weeks to try to keep the house in order. Keith really needed to know that I was there for …

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“Make memories starting now!” An interview about idiopathic pulmonary fibrosis with Kim Durand

Idiopathic Pulmonary Fibrosis, Patient Experiences, Pulmonary fibrosis, Rare Diseases / By

Many of you have seen our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. Well for the first time on our blog, we’re talking with a “Facebooker.” Kim started her Facebook page, Pulmonary Fibrosis Awareness, after her father passed away from idiopathic pulmonary fibrosis (IPF). She recently took some time to talk with us about her experiences with the disease and the benefits of online patient communities. Can you tell us a little about yourself and your experience with IPF? My father was diagnosed with IPF in July of 2006. He always had a chronic cough and never got it checked out until one day it got really bad and my step mom made him go get checked out. He had a chest X-ray and the doctor gave him the tentative diagnosis of IPF. Surely, the only true way to know if a person has IPF is through a lung biopsy so that’s what he had done, I believe in September of 2006. There was a complication during the biopsy. His lung collapsed and he was in the hospital for about 6 weeks. The …

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“Stiff Lungs” -Ian’s Personal Journey from Idiopathic Pulmonary Fibrosis Diagnosis to Lung Transplant

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“Short of Breath? See your Doctor,” said the poster in the pharmacy. I’d been short of breath for some time, but put it down to an unhealthy lifestyle, being 58 and being overweight. The poster encouraged me to visit my doctor, which I did. He sent me for a chest X-ray and I could tell by the reaction of the technician that he’d seen something. He discussed the X-ray with a doctor who then arranged for me to see my own doctor that afternoon. My doctor explained the X–ray had shown I had ‘stiff’ lungs and that I should see a specialist a few days later. At this point I wasn’t too concerned. I was still convinced I would be told to just exercise more and take some pills. After seeing the specialist and having more tests, he told me that I had Idiopathic Pulmonary Fibrosis (IPF) and explained what it was. He also told me that left untreated I could expect to live about another 18 months! You can imagine going home and telling this to my wife and kids. I’d never heard of it before so the first stop was the Internet. Most of the sites you visit frighten you to …

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Living with Idiopathic Pulmonary Fibrosis

Organ Transplants, Rare Diseases / By

What is idiopathic pulmonary fibrosis (IPF)? How many people does it affect? Do we know what the cause is? Can it be treated? If you don’t know the answers, you’re not alone. IPF is considered a rare disease by the National Institutes of Health and much of the research surrounding it is not definitive. So what do we know? IPF is a degenerative condition with no known cause that gradually scars a person’s lung tissue. As more and more tissue scars, the lungs slowly lose their ability to transfer oxygen to vital organs. This can lead to shortness of breath and dry coughing. As the condition progresses, everyday activities become exhausting – just climbing a flight of stairs can be a challenge. It usually affects people between the ages of 50 and 70 years old. More than 100,000 people in the US are diagnosed every year and nearly 40,000 will pass away. The only known cure is a lung transplant. If you’re living with IPF, find others just like you in our growing community of more than 900 IPF patients. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal …

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PATIENTSLIKEME AND BOEHRINGER INGELHEIM ESTABLISH HEALTH INFORMATION COLLABORATION FOR PATIENTS WITH IDIOPATHIC PULMONARY FIBROSIS

Patient Experiences / By

CAMBRIDGE, Mass. — February 28, 2013—On Rare Disease Day®, PatientsLikeMe announces a new collaboration with Boehringer Ingelheim to enhance its online patient community for people with idiopathic pulmonary fibrosis (IPF), a rare lung condition with no known cause, treatment or cure. Through a customized experience on PatientsLikeMe, IPF patients can now monitor their health and progress over time and connect with others to learn more about the condition. “We are excited to partner with Boehringer Ingelheim, a leading pharmaceutical company, to support this patient initiative,” says PatientsLikeMe Co-founder and President Ben Heywood. “Rare diseases are sometimes called ‘orphan diseases’ because they affect so few people, and don’t attract significant research attention or funding. Our website is where patients count. They’re contributing their real-world experience to help others living with IPF and advance research.” According to the National Institutes of Health, pulmonary fibrosis is a disease in which deep lung tissue becomes scarred over time, making it harder for the lungs to move oxygen into the bloodstream. Cases where the cause of the disease is unknown are called IPF and usually affect middle-aged and older adults, in all an estimated 100,000 people in the United States. “I’d been short of breath …

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A Day in the Life of Health Data and Patient Safety Clinical Specialist Christine Caligtan

Epilepsy, Patient Experiences, Research / By

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features PatientsLikeMe employees from different departments.  Today we’d like to introduce you to Christine Caligtan, RN, MSN, a registered nurse who has served as our Health Data and Patient Safety Clinical Specialist since May 2011.  Find out what that involves, why she made the switch to the health startup world and much more in our interview. 1.  What’s it like to be a registered nurse at a health startup? I could not be happier as a registered nurse at PatientsLikeMe. It’s the best of both worlds: I get to interact with patients online, and I am satisfying the informatics side of my interests by working the patients’ data and fostering their ability to track and maintain their health with online tools. When I started working as a nurse I never thought my career path would lead me to a health startup. As I encountered different clinical settings and patient experiences, I knew that technology was the key to advancing healthcare.  From that point, I decided I wanted to work in the field of nursing informatics. The first …

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