4 posts tagged “rare lung disease”

PatientsLikeMe creates largest open registry of IPF patients in the world

Posted August 22nd, 2013 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 find IPF research studies in their area. In the process, members are contributing new, comprehensive data about the disease that will aid clinical research and the development of new treatments.

“We have become a magnet for people who want to learn about living with disease, and a central repository of real-world information on 2,000 common and rare conditions,” said Co-founder and President Ben Heywood. “It’s gratifying to see people gathering faster than ever before to support each other, live better, and contribute vital data to medical research.”

As the IPF community grows, PatientsLikeMe plans to study the challenges in diagnosing the disease and to ask patients about other top priorities for research. IPF patients interested in participating in research to improve understanding of IPF can sign up at http://www.patientslikeme.com/join/ipf/whatisipf.

The data shared on the website to date offer a snapshot of the IPF community’s members and highlight the effect the disease has on their lives:

  • The average age is 64; four out of five are older than 55.
  • 54% are male, 46% are female.
  • Approximately 15% report having familial IPF, a subtype of IPF thought to be genetically related.
  • An initial review of comorbidities shows that pulmonary hypertension, a condition that puts additional stress on the cardiovascular system, is most frequently cited. Other common co-morbidities include type-2 diabetes, gastro-esophageal reflux disease and osteoporosis.
  • Most report limitations to their activity and energy level. Over 90% experience shortness of breath during activities, while over 50% experience shortness of breath by just walking up a few stairs. About 7% are short of breath even when they are sitting down or at rest.
  • Close to 90% have noticed their energy level affected by IPF. About 35% say they often have to nap during the day or are always tired, no matter how much they sleep.
  • About 80% report having a cough. The majority report having a mild or moderate cough, but approximately 15% have severe coughing.
  • Approximately 11% have had unplanned hospitalizations as a result of their IPF in the past three months.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 35 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

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

Posted June 22nd, 2013 by

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 allowed at the dinner table. Most families discourage this, as it is always nice to have the family come together at the end of the day and talk about their day. The one time when people are tuned to each other as opposed to their devices! Once Keith was placed on the list, we were waiting for that call to come which would signal the next phase of our life. This meant that our phones were even MORE attached to us, and yes, were placed on the dinner table until that call came.


How are you doing post transplant?
[Keith] I feel fantastic! Being able to breathe with deep breaths every minute has been the most life changing experience for me. I am still sifting through a bit of a fog with some pain medications but as they are reduced, I find myself feeling more and more enthusiastic about what lies ahead. Each day is a gift, and I am enjoying my “bonus round.” The realities of transplant are such that we never know what tomorrow will bring, so I am living my life to the fullest every day that I am here.

What’s the one thing you both think every rare lung disease patient should know?
[Sarah & Keith] There is hope. With awareness we can educate people on the necessity to be organ donors, which can ultimately get rid of the list! The transplant program at Toronto General is exceptional and if you do what they tell you, take care of yourself and do your physio…there truly is hope for a better life with new lungs. The hospital’s goal is to help you through your disease in any way possible, and transplant is the last option, but if you need it, this is the place to be.

Sarah and Keith are part of our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness and change healthcare for good. Sarah started blogging about her fiancé Keith’s journey with a rare lung disease back in July of 2012 on her blog Taking a Deep Breath.