idiopathic

Hartfell shares about her PatientsLikeMeInMotion™ experience

PatientsLikeMe members hail from around the globe, and recently, 63 people gathered on the coast of Scotland for a walk to raise awareness of IPF and help people with IPF through Chest Heart & Stroke Scotland. The coolest part? The event was organized entirely online by PatientsLikeMe member Hartfell, and through the PatientsLikeMeInMotion™ program, everyone was excited to get out there and hike. Here’s what she had to say: “My experience with being diagnosed was quite complacent, as I had never heard of idiopathic pulmonary fibrosis (IPF). But when I read about it, it was a big shock. I found PatientsLikeMe online and was so glad because there was so much information and I was able to communicate with people with the same illness. I decided to organize a sponsor walk 5 months after I had been diagnosed to raise awareness of IPF. I have been a keen hill walker (hiker) for 23 years, and I organized a coastal walk at Kippford, with 3 levels of walks to cater to all abilities. We had a fantastic day with weather views and company and we raised £1,453.68 ($2,268.44), which was brilliant. The money went to Chest Heart & Stroke Scotland, which …

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“Don’t go it alone” – IPF member Christine shares about her health journey

Christine_Williams was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2009, and ever since, she’s been managing a “rollercoaster ride that’s terrifying and not fun.” But she’s connected with your community on PatientsLikeMe for inspiration and was even referred to a new medical center to be evaluated for a lung transplant by her “rehabilitation buddies.” Below, read what Christine shared about her diagnosis, progression and thoughts on living with IPF. Can you share a bit about your diagnosis experience? We’ve heard from many members that finding an official diagnosis isn’t always easy. What that true for you, too?  Mostly no. In March 2009, I contracted pneumonia back to back within 8 weeks. It was around the time when the swine flu became a big deal, and I had visited Cancun, Mexico that year. I wasn’t necessarily in great health but fairly healthy. I had always attributed my shortness of breath to me being overweight. Because of the pneumonia, a CT scan was ordered. Then a bronchoscopy and finally a video assisted lung biopsy. I was diagnosed however right after the bronchoscopy. I started exhibiting shortness of breath symptoms in 2001. Even went through a series of PFTs at the time but …

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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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“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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“Gee, doc, ya think?” – Barbara speaks about her diagnosis and life with IPF

PatientsLikeMe member Barbara (CatLady51) recently shared about her journey with idiopathic pulmonary fibrosis (IPF) in an interview with us, and she spoke about everything from the importance of taking ownership of managing her condition to how she hopes to “turn on the light bulb” by donating her personal health data. Read her full interview about living with IPF below. Some PF members report having difficulty finding a diagnosis – was this the case with you? What was your experience like?  My journey started back in 2005, when after my first chest cold that winter, I was left with severe coughing spells and shortness of breath. An earlier chest x-ray didn’t indicate any issues, so I was referred to a local community-based respirologist (what we call a pulmonologist here in Canada) who wasn’t concerned with my PFT results. I also had a complete cardiovascular workup, again with no alarming results. Then, in 2008, I had another chest cold. Growing up in a family of smokers and being the only non-smoker, I seemed to have managed to miss having chest colds, but 2005 and 2008 were definite exceptions. Again, a normal x-ray, another visit to the respirologist and another PFT that didn’t …

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“Pay it forward.” Following up with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori

  This is Lori’s third interview on the PatientsLikeMe blog! She’s been sharing her journey with idiopathic pulmonary fibrosis (a rare lung disease) with all of our followers here, along with her real-world health experiences on her PatientsLikeMe profile. Since the last time we caught up with her, Lori has lost 70 lbs., has made the transplant list and is playing what she calls ‘the waiting waltz.’ Check out the entire interview below where she talks about ‘life on the list’ and what inspires her to donate her health data. And don’t forget to check out Lori’s own blog called Reality Gasps. Thank you Lori for continuing to share and inspire! If you missed one of her previous interviews you can find those here.     You share a lot about reaching your weight loss goal (70 lbs! That’s awesome!). Can you describe what exercise means to someone living with IPF? And some of the other ways you achieved your goal? For someone living with IPF, exercise isn’t about pushing yourself to go farther, faster or harder — it’s about endurance. Pulmonary Rehab is always focused on doing whatever you’re doing for as long as you can. That’s because endurance …

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