29 posts tagged “Idiopathic pulmonary fibrosis”

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


Meet Laura from the PatientsLikeMe Team of Advisors

Posted March 16th, 2016 by

 

We’d like to introduce you to Laura, another member of your 2015-2016 Team of Advisors. When Laura was diagnosed in 2013, she’d never heard of Idiopathic Pulmonary Fibrosis (IPF). Flash forward three years, and she’s made patient education and advocacy her main focus.

Laura has spoken before the FDA, regularly blogs about IPF on various social platforms and recently started a support group at a local pulmonary rehab center. When we caught up with her, she told us: “I never thought this would be my path but it has been very rewarding.”

Below, Laura opens up about the loneliness of living with a chronic illness and how important it’s been for her to connect with other patients who know what she’s going through.

What gives you the greatest joy and puts a smile on your face?

My grandbabies, both children and animals. Both have no expectations of my limits and love me unconditionally. No matter what they do they make me happy. Soon I will be a great-grandmother and the joy of knowing I’ve lived to see it is a blessing.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

I try to keep it very simple for those that do not understand IPF. I tell them I have Idiopathic Pulmonary Fibrosis which is scarring of the lung…that my lungs will fill up with scars and there is no cure and currently the only treatment is one of two pills that may slow the progression or a lung transplant. Anything more than that and you lose their interest. If they ask for more information I give it, otherwise I don’t.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

To take a deep breath and learn everything they can so they can empower themselves.

How important has it been to you to find other people with your condition who understand what you’re going through?

Very important! I have a chronic, fatal terminal illness. It’s a very lonely place to be. The only one that understands the shift in moods is someone who is where I am.

 

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