Idiopathic pulmonary fibrosis

Still leading a full life – An interview with IPF member David

David’s (darbygreenboy) username comes from the village in the English countryside where he lives and is still an active member of the community. We caught up with this grandfather of 10 – a former business owner, mayor and leader of the town council to talk about living with IPF. Here’s what we learned … Tell us a little bit about yourself. What are some of your hobbies and passions? I am 70 years young and live in England in a village called Darby Green in the Parish of Yateley. It is in the countryside, but only 30 miles from London. I live there with my wife of 48 years, Rose, whom I met 51 years ago at Youth Club and we have been together ever since. We have 3 children: Abbie, Emma and Stephen, and 10 grandchildren aged from 3 months to 13 years old and they all live nearby. I had my own business for 30 years, but I am now retired. I am a Yateley town councillor and have been for the last 12 years. I was also mayor of my town some 8-9 years ago and leader of the council for 7 years. I love travelling and before being …

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September is Global Pulmonary Fibrosis Awareness Month

If you hadn’t already heard about September being named Global Pulmonary Fibrosis Awareness Month by The Pulmonary Fibrosis Foundation (PFF), there are still two days for you to join in and help spread the word. What does “global awareness” mean? Pretty much just what it sounds like. It’s spreading awareness so that everyone around the world knows what PF is. If you’re living with it, you won’t have to explain it to those around you anymore. If you’re not, you’ll have an idea of what those with PF are going through.  And it means that we all make a unified commitment to improve the lives of patients through resources, research, and the development of new treatments. How can you help? Global also means everyone. Including you. There are many ways you can get involved in raising awareness among family, friends, healthcare professionals, colleagues, neighbors, leaders in your community and anyone else in your life through the end of the month. (Hint: You can start by sharing this blog!) You can “Blue-It-Up” if you want. For this social media challenge, draw attention to PF by putting blue in your hair, wrapping blue ribbon around your trees or visiting a spa for a blue mani-pedi with some …

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Food for Thought: July (chocolate) edition, take 2

Last year, July’s Food for Thought revolved around MS members sharing their experiences with chocolate. This year, we thought we’d continue the tradition – check out what a few members had to say about their relationships with the delicious sweet: “I have been trying a dairy free diet for a couple of months due to me having a problem with milk protein which is an antigen to the lungs and acts like any other substance that can affect our breathing. I have a treat of dark chocolate now and again and have been grateful for a plentiful supply of dairy free products.” -IPF member “For me, I don’t deny myself a little sweet treat.  What I do deny myself is massive amounts of sweet treats. I buy a few high quality dark chocolates and allow myself one per day. Or I buy the sugar free mousse packs in the refrigerator section or the sugar free Jell-O puddings. They seem to work. I also make my own brownies and cookies using high fiber ingredients and sugar substitutes. I have been using Xylitol with good success too.” -Diabetes member “I will take a teaspoon or two of coconut oil (organic, extra virgin) …

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PatientsLikeMe members to be highlighted in patient empowerment webinar

Many PatientsLikeMe members talk openly about the reasons why they donate their health data and why they believe patient-centered healthcare means better healthcare for all. And just a week from now, two of them will be sharing their stories with everyone in a live webinar. On Tuesday, January 20th, at 2:00pm EST, the Partnership to Improve Patient Care (PIPC) is hosting their first “Patient Empowerment Webinar,” an online event focusing on the importance of patient engagement in their own healthcare and in health policy. Two PatientsLikeMe members, Ms. Laura Roix and Ms. Letitia Brown-James, will be participating in the discussion, and their experiences will be a part of the webinar. Here’s a little bit about Laura and Letitia, and more ways they’re already empowering others: Laura is a member of the idiopathic pulmonary fibrosis (IPF) community on PatientsLikeMe, and she recently traveled to Maryland to speak at the Food and Drug Administration’s (FDA) Patient-Focused Drug Development Public Meeting on IPF.  Laura went with our very own Sally Okun RN, VP of Advocacy, Policy and Patient Safety and spoke about her journey and what it’s like to live with IPF. (She recapped her experiences in an October blog interview.) But that’s …

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“I continue to be inspired by those who share this fight with me” – PatientsLikeMe member Doug shares his journey with HP

Meet Doug. He’s part of the pulmonary fibrosis (PF) community on PatientsLikeMe and is living with a condition specifically known as chronic hypersensitivity pneumonitis (HP). It’s similar to other types of PF, but also has its differences. We caught up with Doug for an interview to help spread the knowledge about these two conditions, but learned so much more. He shared what it’s like to live with HP, how he uses PatientsLikeMe to learn more about his own health and how the community has helped him to stay inspired in his fight. Can you share a bit about your chronic HP? Can you explain to our blog followers how it’s different than IPF? I believe the major difference is that with hypersensitivity pneumonitis there is a cause. If I’m correct there are three forms: acute, subacute and chronic. All are caused by exposure to an antigen that may or may not be identified. In my case, I have chronic hypersensitivity pneumonitis (HP). My specialists have determined that it’s not necessary to identify the antigen since my condition is chronic and cannot be reversed.1 What was your diagnosis process like, and how was it different than what you’ve heard about getting …

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2014 recap – a year of sharing in the PatientsLikeMe community

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes. A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015. Team of Advisors In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015. Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and …

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“We are many” – PatientsLikeMe member Laura reports back on her experiences as a panelist at the FDA Patient-Focused Drug Development Public Meeting on IPF

Just yesterday, you saw our very own Sally Okun RN, Vice President of Advocacy, Policy and Patient Safety, reported back about her experiences at the FDA Patient-Focused Drug Development Public Meeting on IPF. And today, we wanted to share the patient experience. For each public meeting, the FDA invites patients and caregivers to apply to be a panelist and share their real-world experiences with the disease – and Laura (LaurCT) was selected to attend! So, along with Sally, Laura headed to Silver Springs, Maryland and spoke to the FDA about what life if really like living with IPF. Check out how it all went below. Laura was officially diagnosed with idiopathic pulmonary fibrosis (IPF) in May 2013, but was living with symptoms for years before that. She’s really an inspirational member of the community and always has her 3-stars (which means Laura is a super health data donor!). Why did you want to be part of the FDA public meeting? It was simple for me, I wanted to be part of the solution. When I was diagnosed with IPF I was quite the mess as many of us are. I’m a fighter. I just can’t sit back and do nothing. …

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Sally Okun reports back from the FDA Patient-Focused Drug Development Public Meeting on IPF

On September 26th I was at the FDA for the Patient-Focused Drug Development Public Meeting on IPF. This is one of 20 meetings that the FDA is holding to learn directly from patients and their caregivers about daily life with the specific condition’s symptoms and treatments. (You can learn more about these meetings here.) I have attended a number of these meetings and often have meaningful data to share from our own PatientsLikeMe members. So far, however, the FDA has only allowed patients and caregivers to present and participate as panelists. So to get as much of our members’ real-world health data in front of the FDA as possible, I take full advantage of the public comment period at the end of each meeting. It’s a short 3-5 minutes of time, but it’s a chance to share insights from PatientsLikeMe members and to reflect on some of what’s been discussed during the public meeting. In addition, we submit a full report to the FDA’s public docket that is open for comment two full months following the meeting. The report includes a community profile and the results of any polls PatientsLikeMe members have taken part in prior to the meeting. This meeting was …

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Shining the spotlight on pulmonary fibrosis

  You may have seen our post on Pulmonary Fibrosis Awareness Day, but did you know September is also Pulmonary Fibrosis Awareness Month? The Pulmonary Fibrosis Foundation (PFF) wants everyone to shine the spotlight on idiopathic pulmonary fibrosis (IPF), and many PatientsLikeMe members have already shared their stories – Lori documented her journey from diagnosis to transplant in a 4-part blog interview series, along with Barbara and John. We also wanted to pause for just a minute to recognize PatientsLikeMe member Bryan. He joined the community in 2013 after being diagnosed with IPF and was an inaugural member of our Team of Advisors. We are sad to share that last month, Bryan passed away, and all of our thoughts are with his family, friends and fellow PatientsLikeMe community members. But even though Bryan may no longer be with us, his memory and data live on. The experiences he shared will help drive change in IPF and in healthcare. We can think of no better way to pay tribute than to share his recent video with everyone. Bryan, you will be missed. In Memoriam Bryan Kincaid (1947-2014)

Let the world know about pulmonary fibrosis

On Rare Disease Day back in February 2013, we announced our partnership with Boehringer Ingelheim to help enhance the online idiopathic pulmonary fibrosis (IPF) community. And by September 7th that same year, the community had grown to just over 1,000 people. Today, on the next edition of Global Pulmonary Fibrosis Awareness Day, the community stands 2,500+ members strong, making it the largest online gathering of IPF patients anywhere in the world. In just a year, the community has almost tripled in size, and everyone is sharing about their experiences so that other patients, doctors and researchers can learn more about life with IPF. But what exactly is IPF? Pulmonary fibrosis (PF) is a medical condition that causes lung tissue to thicken, stiffen and scar over a period of time, and “idiopathic” means “no known cause.” According to the Coalition for Pulmonary Fibrosis, there are over 100,000 Americans living with IPF at any given time, and an estimated 40,000 will die from the condition every year. And besides a complete lung transplant, there is no known cure for IPF.1 Today, the Pulmonary Fibrosis Foundation (PFF) is encouraging everyone to educate, share, fundraise and start conversations about IPF. You can learn more about …

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