Conditions Archives

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

Coming together to recognize World Aids Day

We believe that the best way to live better is by sharing real-world health experiences with each other, and today, PatientsLikeMe and aids.gov are encouraging everyone to share their own stories with HIV and AIDS. The theme of this year’s World Aids Day is “Shared Responsibility: Strengthening Results for an AIDS-Free Generation,” and you can participate by reaching… Continue reading Coming together to recognize World Aids Day

World Parkinson’s Congress recap

Here at PatientsLikeMe, we always look forward to hopping on the road and visiting you, the members who generously share personal health journeys so everyone can learn to live better, together. Recently, Molly (she’s part of your Community Team), Brad and Jim (part of our Partner Marketing team) drove north to Montreal to attend the… Continue reading World Parkinson’s Congress recap

Uniting for World Diabetes Day and American Diabetes Month

Diabetes is one of the most widespread conditions in the world.1 Globally, more than 370 million people are living with diabetes, including over 25 million in the United States alone.2 And throughout November, the American Diabetes Association (ADA) will raise awareness about everything diabetes, from risk factors and genetics to proper diet and blood sugar testing. The… Continue reading Uniting for World Diabetes Day and American Diabetes Month

“Sleep has become a process.” Checking in with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori

Some of you probably remember seeing her on the PatientsLikeMe blog before. Lori is living with idiopathic pulmonary fibrosis, and when we first chatted with her last July, she shared her experiences with blogging, the difficulty in finding the right diagnosis and how connecting with others has positively impacted her life. For our “Are You… Continue reading “Sleep has become a process.” Checking in with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori

Raising awareness for epilepsy in many different ways

November is often seen as a month of transition – autumn gives way to winter, the holiday season fires up, and our short sleeves disappear for warm coats and sweaters. And as many of you know, November is also National Epilepsy Awareness Month. Many different organizations focus on epilepsy throughout the year, but this November,… Continue reading Raising awareness for epilepsy in many different ways