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

“In my own words” – PatientsLikeMe member Vickie shares about her experiences with lung cancer

Meet Vickie, a PatientsLikeMe member who has survived cancer not once, but twice. She’s sharing her story, from diagnosis to survivorship, during Lung Cancer Awareness Month. She spoke about her reaction to getting diagnosed, the anxiety filled months leading up to surgery and what recovery was like post-operation. Learn about her journey below. The journey… Continue reading “In my own words” – PatientsLikeMe member Vickie shares about her experiences with lung cancer

“I just kind of went on with life.” – PatientsLikeMe member Fred shares his experiences with MS

We’ve interviewed a lot of members on the blog over the years, and each has a different perspective on life with MS. Fred1118 has taken sharing about his life with MS to a whole new level, documenting his life in a personal photoblog and posting the pictures with the world online. Fred shared all about… Continue reading “I just kind of went on with life.” – PatientsLikeMe member Fred shares his experiences with MS

“Perseverance, patience and acceptance” – PatientsLikeMe member Steve shares what it’s like to live with MND

Those three words describe how PatientsLikeMe member Steve says he has adapted to life with motor neuron disease (MND). He was diagnosed with MND (also known as ALS) in 2007, and technology has helped Steve navigate the challenges of living with ALS while raising three children. He’s also made a video about his journey, called… Continue reading “Perseverance, patience and acceptance” – PatientsLikeMe member Steve shares what it’s like to live with MND

LUNGevity Foundation and PatientsLikeMe Unite for New Partnership

Organizations Team Up to Enhance Patient Network for People Living with Lung Cancer, Expand Reach for Research Washington, DC (October 30, 2014) – Today, LUNGevity Foundation, the leading lung cancer nonprofit, and PatientsLikeMe, the leading patient network, announced a joint initiative to help people diagnosed with lung cancer. The organizations are collaborating to increase the… Continue reading LUNGevity Foundation and PatientsLikeMe Unite for New Partnership

“Hope won’t make it happen” – PatientsLikeMe member Phil shares about her experiences with lung cancer

That’s Phil’s (PhillyH) personal motto in life – “hope won’t make it happen.” She’s a PatientsLikeMe member who hails from Northampton in the United Kingdom and was diagnosed with lung cancer in 2012. Ever since then, she’s been learning to live with the ups and downs of her condition. She recently shared her experiences in an interview… Continue reading “Hope won’t make it happen” – PatientsLikeMe member Phil shares about her experiences with lung cancer

“I was just doing my job” – PatientsLikeMe member Lucas talks about his experiences with PTSD after serving in the Marines

PatientsLikeMe member Lucas (Freedom666420), or Sarge, as his friends and fellow soldiers call him, served in the Marines during two tours in Iraq and was injured while literally hoisting his entire squad up and over a wall to take cover from enemy fire. He recently spoke with Sarah, a PatientsLikeMe community moderator, and shared about his… Continue reading “I was just doing my job” – PatientsLikeMe member Lucas talks about his experiences with PTSD after serving in the Marines

“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… Continue reading “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

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

“Bang for the buck.” PatientsLikeMe member Steve shares about his experiences with ALS and the IceBucketChallenge

Ice + water + video camera = a viral ALS awareness campaign that has spread over social media and the news like wildfire. Millions of dollars has been raised for ALS research while more and more, people are learning about this neurological condition. Recently, PatientsLikeMe member Steve (who has been living with ALS since 2009)… Continue reading “Bang for the buck.” PatientsLikeMe member Steve shares about his experiences with ALS and the IceBucketChallenge