Several people in the PatientsLikeMe community use the phrase “new normal” after being diagnosed with pulmonary fibrosis (PF), and PF member John_R doesn’t’ think his new normal is all bad. This month, he chatted with us about getting diagnosed with PF, bringing oxygen to the workplace, and how living with his Sweetie keeps him focused… Continue reading “Life is good” – PatientsLikeMe community member John_R speaks about his new life after being diagnosed with pulmonary fibrosis
Category: Conditions
Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.
Getting involved during Multiple Sclerosis Awareness Week
Did you know that every year, the first week of March is dedicated to multiple sclerosis (MS) awareness in the United States? From March 3rd to March 9th, events will be held across the country to educate people about the four different kinds of MS and how the neurological condition impacts peoples’ lives. In the… Continue reading Getting involved during Multiple Sclerosis Awareness Week
Uniting for hope on Rare Disease Day 2014
Today, healthcare professionals, research advocates and many people living with rare conditions are coming together to observe Rare Disease Day. It’s all about raising awareness for rare and genetic diseases, improving access to treatments and learning more about what exactly makes a condition rare. In the United States, a disease is considered rare if it… Continue reading Uniting for hope on Rare Disease Day 2014
“MS cannot stop you from living your life and following your dreams” – an interview with patient advocate and PatientsLikeMe member Starla Espinoza
Multiple Sclerosis Awareness Month is fast approaching in March, but we just couldn’t wait until then to share our recent interview with patient advocate and PatientsLikeMe member Starla Espinoza, also known as baebae. On top of being a PatientsLikeMe member since 2007, tracking her health and sharing experiences with the community, she’s also a blogger and… Continue reading “MS cannot stop you from living your life and following your dreams” – an interview with patient advocate and PatientsLikeMe member Starla Espinoza
PatientsLikeMe and Sage Bionetworks launch open science study for people with Parkinson’s Disease
Companies Partner With TED Fellow Dr. Max Little to Map the Severity of the Disease CAMBRIDGE, Mass.— February 5, 2014—PatientsLikeMe and the nonprofit research organization Sage Bionetworks announced today the launch of a new crowdsourced study to develop voice analysis tools that both researchers and people with Parkinson’s disease (PD) can use to track PD… Continue reading PatientsLikeMe and Sage Bionetworks launch open science study for people with Parkinson’s Disease
Living with hope – An interview on AKU with Alycia and Nate
We’ve had the pleasure of talking with and featuring many PatientsLikeMe members on the blog over the years, but Nate is the youngest by far. He’s just 5 years old and is living with Alkaptonuria (AKU), a rare metabolic disease, sometimes called Black Bone Disease. Recently, we had the chance to chat with his mom,… Continue reading Living with hope – An interview on AKU with Alycia and Nate
PatientsLikeMe in real life: reporting back from the PFF Summit
Dave, Rishi, and I spent a few days last month in sunny La Jolla, California – site of the biennial PFF Summit. Well, La Jolla is usually sunny… this year it was unseasonably cold and rainy! Nevertheless, not even the nasty weather could dampen the enthusiasm of more than 500 clinicians, researchers and (most importantly!)… Continue reading PatientsLikeMe in real life: reporting back from the PFF Summit
“We can and will do better” – An interview on pulmonary fibrosis with Dr. Jeff Swigris
Just this past month, a few members of the PatientsLikeMe Team (Arianne, Dave and Rishi) traveled to La Jolla, CA for the Pulmonary Fibrosis Foundation Summit. It was quite the mixed crowd (with patients, clinicians and researchers), and it gave them (and everyone at PatientsLikeMe) a chance to learn more about pulmonary fibrosis (PF) from… Continue reading “We can and will do better” – An interview on pulmonary fibrosis with Dr. Jeff Swigris
A life well lived: Giving and sharing with PatientsLikeMe member Geof
At PatientsLikeMe, we believe that the patient voice is what can change healthcare for good, so we’re always excited when our members take the time to talk about their personal stories with the community. This week, Geof, a PatientsLikeMe multiple sclerosis (MS) community member with a big heart and an even bigger family, shared his… Continue reading A life well lived: Giving and sharing with PatientsLikeMe member Geof
“Listen to your body” – PatientsLikeMe team member Maria shares her story for National Crohn’s and Colitis Awareness Week
Ok, we’re going to switch things up a little bit. This week (Dec. 1st-7th) is National Crohn’s Disease and Colitis Awareness Week, and besides sharing about ways you can help, we thought we’d get personal and tell Maria Lowe’s story. Maria actually works at PatientsLikeMe as part of our Health Data Integrity and Research Teams,… Continue reading “Listen to your body” – PatientsLikeMe team member Maria shares her story for National Crohn’s and Colitis Awareness Week