Say hello to John (John_R), a father, grandfather and idiopathic pulmonary fibrosis (IPF) survivor. Sound familiar? Last year he shared his story about life after a double lung transplant and the importance of considering a lung transplant early. This year, John started a Facebook group to live-stream pulmonary fibrosis (PF) support group meetings and conferences.… Continue reading Meeting PF patients where they are
patientslikeme
“Every morning that I wake up feeling well is a day to celebrate life.” Revisiting member Gloria’s journey
We first met member Gloria (Glow4life) in 2015 when she shared her journey on the PatientsLikeMe blog. She opened up about her experiences from receiving a lung cancer diagnosis (adenocarcinoma), to the sudden loss of her husband and going through several rounds of treatment. Despite it all she never gave up hope, and two years… Continue reading “Every morning that I wake up feeling well is a day to celebrate life.” Revisiting member Gloria’s journey
“My expertise is as a person with Parkinson’s”: Member Lisa brings the patient voice to drug development
Member Lisa (lcs), a Team of Advisors alum who’s living with Parkinson’s disease, has found her advocacy niche: involving patients in drug development. Diagnosed with PD in 2008, Lisa served as a patient thought leader and co-author of a published journal article called “Increasing Patient Involvement in Drug Development.” She worked on the publication along… Continue reading “My expertise is as a person with Parkinson’s”: Member Lisa brings the patient voice to drug development
Member voices: I have IBS, here’s what I do…
If you’re living with irritable bowel syndrome (IBS) you’re not alone. In fact, IBS affects up to 1 in 7 Americans, so chances are you may know someone who is going through the same thing. Despite it being so common, many people living with IBS are unaware that their symptoms indicate a medically recognized disorder,… Continue reading Member voices: I have IBS, here’s what I do…
World Parkinson’s Day: Meet Eileen, a PatientsLikeMe researcher with a passion for PD
Today is World Parkinson’s Day, and 2017 marks the 200th anniversary of the identification of Parkinson’s Disease (PD). Meet Eileen Mack Thorley, a research scientist with a passion for PD research. By day, she works on a variety of research projects at PatientsLikeMe. On her own time, you might find her doing FaceTime with her… Continue reading World Parkinson’s Day: Meet Eileen, a PatientsLikeMe researcher with a passion for PD
PatientsLikeMe and Shire Pharmaceuticals Collaborate to Study Rare Genetic Diseases
CAMBRIDGE, Mass.–(BUSINESS WIRE)—PatientsLikeMe and Shire plc (LSE: SHP, NASDAQ: SHPG) have announced a new collaboration that will support the development of a patient-centered, real world health learning system that expands understanding of patient health and disease. Shire, the global leader in rare diseases and other highly specialized conditions, will work with PatientsLikeMe to appropriately engage… Continue reading PatientsLikeMe and Shire Pharmaceuticals Collaborate to Study Rare Genetic Diseases
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