Back in December, our VP of innovation, Paul Wicks, Ph.D., spoke at the annual International Symposium on ALS/MND in Dublin. The goal of the annual meeting is to share new understandings of ALS/MND as quickly as possible through collaboration between leading researchers around the world. Now, we’re sharing a video of his presentation about what… Continue reading Paul Wicks on the power of sharing data
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.
Teaming up with LupusChick to boost chronic condition awareness
PatientsLikeMe is excited to announce a new partnership with “LupusChick,” Marisa Zeppieri-Caruana. She’s an influential blogger, advocate and advisor for the lupus and chronic condition community – and an all-around cool gal. Marisa grew up with various health issues and suffered serious injuries in April 2001 when she was run over as a pedestrian by… Continue reading Teaming up with LupusChick to boost chronic condition awareness
3 energy-saving tips for people with lupus
Fatigue can be a big deal when you have lupus. About 43 percent of PatientsLikeMe members with systemic lupus erythematosus (SLE) who are tracking fatigue as a symptom say that it’s “severe.” A rough day can feel like “walking through knee-deep water,” notes one member. Here’s a roundup of energy-saving tips from a few different… Continue reading 3 energy-saving tips for people with lupus
44 Celebrities With Kidney Disease
Roughly 37 million US adults have chronic kidney disease (CKD). Kidney disease is a silent killer, ranking as the number one leading cause of death. Your kidneys are about the size of a computer mouse and filters all the blood in your body. Their primary role is to remove waste, toxins, and excess fluid. They also… Continue reading 44 Celebrities With Kidney Disease
“My experience as a patient and son helps me”: PatientsLikeMe software engineer Alex’s backstory
Meet Alex Bromley, a PatientsLikeMe software engineer who’s living with gastroesophageal reflux disease (GERD) and whose mother has fibromyalgia. He recently shared some insight on his and his mom’s conditions, his experiences as both a PatientsLikeMe employee and member and what he enjoys outside of work. What first drew you to working at PatientsLikeMe? Can… Continue reading “My experience as a patient and son helps me”: PatientsLikeMe software engineer Alex’s backstory
Multiple myeloma community members form “forever friends” by taking it offline
What started as a simple chat between friends in the forum evolved into something much bigger. Members from the multiple myeloma community on PatientsLikeMe decided to take their friendship out of the forums and into real life. Marcia (marcia_holman), Dennis (DennisIvan), Paul (paulatsea) and Lee (Dapylil), along with spouses and grandchildren, got together and discussed… Continue reading Multiple myeloma community members form “forever friends” by taking it offline
March is Brain Injury Awareness Month. Let’s learn more, together.
Brain injuries can happen to anyone, anywhere at any time. The important thing to know is that you’re not alone, which is the primary theme of Brain Injury Awareness Month organized by the Brain Injury Association of America (BIAA). At least 2.5 million children and adults sustain traumatic brain injuries (TBI) in the U.S. each… Continue reading March is Brain Injury Awareness Month. Let’s learn more, together.
“I thank my donor every day for this gift”: Member Laura shares her lung transplant story
Meet LaurCT, an active 2015-2016 Team of Advisors alum living with idiopathic pulmonary fibrosis (IPF). She underwent a left lung transplant at Brigham and Women’s Hospital in Boston in January and recently shared her experience with us. How are you feeling these days? I am feeling great. I’ve had a couple bumps in the road… Continue reading “I thank my donor every day for this gift”: Member Laura shares her lung transplant story
The record on research: Catching up with TOA member Cris
Back in January we introduced Cris, a member of the 2016-2017 PatientsLikeMe Team of Advisors living with ALS. She’s also a fierce patient advocate who’s participated in several clinical trials since her diagnosis. We recently caught up with her to learn about her experience with clinical trials and why access and awareness of clinical trials… Continue reading The record on research: Catching up with TOA member Cris
ALS Reversal: A chat with Duke’s Dr. Rick Bedlack
“This is the fastest enrolling trial in ALS history.” A brightly-colored blazer and the determination to make a difference for ALS patients are two of Dr. Rick Bedlack’s defining characteristics. Dr. Bedlack is a tenured associate professor of Medicine/Neurology at Duke University. He’s also the director of the Duke ALS Clinic that’s partnering with… Continue reading ALS Reversal: A chat with Duke’s Dr. Rick Bedlack