23 posts in the category “Pulmonary fibrosis”

Meeting PF patients where they are

Posted May 8th, 2017 by

Say hello to John (John_R), a father, grandfather and idiopathic pulmonary fibrosis (IPF) survivor. Sound familiar? Last year he shared his story about life after a double lung transplant and the importance of considering a lung transplant early. This year, John started a Facebook group to live-stream pulmonary fibrosis (PF) support group meetings and conferences.

“I am very passionate about honoring the precious gift provided by my donor family and in living a life worthy of their generosity.”

John received a bilateral lung transplant on January 1st, 2015, and believes he’s alive today thanks to his donor family and care team at UT Southwestern in Dallas. Now, he’s committed to raising awareness for the needs of the pulmonary fibrosis community.

Life after transplant

John’s life before transplant included the use of supplemental oxygen 24 hours a day, and what he calls, “an eminent expiration date” in his near future. He couldn’t visit family in Colorado or the higher elevations of New Mexico due to the altitude, and every breath was a struggle.

“The biggest thing about life after lung transplant is that I no longer have a firm expiration date, I can have hope. I can go to Colorado and attend medical conferences. I can help others by sharing my experiences and the knowledge I’ve gained. I have also learned to cherish the moments that make living wonderful.  A moment of kindness, shared empathy or even a smile mean so much to me now. The rest doesn’t really matter. Life is good.”

Fighting isolation with the help of Facebook

According to John, many people diagnosed with IPF have never even heard of the disease prior to hearing of it from their doctor. Then they learn that their disease has no cure and only a couple of treatments that slow the progress of fibrosis for some. Online research about IPF offers little comfort either. John’s experience motivated him to start an online support group using Facebook Live.

 

“IPF can be a very isolating disease. Your friends and family have never heard of it and you are reminded of your mortality with every breath. In my case, each trip to the pulmonologist was just proof that my disease was progressing. A support group can help with the feelings of isolation and loneliness, plus provide valuable information and hope for the future.”

 

After trying a paid platform to share their meetings, but finding it too difficult for some participants to access, John thought Facebook Live seemed a good option. Once someone has joined the group they get a notification when the support group goes live.

“They are then just one click away from being able to join the meeting and participate with folks who share the same journey.”

Though the Facebook group is new and participation is growing, John hopes that it will help people understand that they are not alone, and that he can provide some valuable information about IPF and lung transplants.

Managing with PatientsLikeMe

“I use PatientsLikeMe to track my data and as a platform to share with others in our community. I can easily view my lung function both before and after my transplant, track my weight loss and ensure I am maintaining a healthy weight, and keep an eye on A1C, cholesterol, and all my medications in one place. PatientsLikeMe has also given me the opportunity to participate in studies and share my voice with the healthcare community.
 

“The pulmonary fibrosis community on PatientsLikeMe was my anchor when I was coming to terms with my IPF diagnosis, and continues support now that I’ve had a transplant.”

 

Share this post on Twitter and help spread the word.


PatientsLikeMe Welcomes Next Patient Team of Advisors

Posted November 14th, 2016 by

 

CAMBRIDGE, Mass, November 14, 2016PatientsLikeMe has named 11 members to its patients-only 20162017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners.

“Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.”

More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington.

John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and collaborate with PatientsLikeMe and other members of the Team of Advisors. “My experience with PatientsLikeMe has been filled with exploration, information and conversation. My health journey has been positively impacted through my connection with other members, by the various tools for tracking and logging health data, and by opportunities just like this – to participate in an advisory capacity.”

The 2016-2017 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year. This is the third Team of Advisors the company has formed. The 2015 team focused on redefining patient partnerships and established new ways for the healthcare industry to connect with patients to deliver better care. In 2014, the inaugural group provided feedback to the research team and discussed ways that researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe

PatientsLikeMe 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. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
617.548.1375