Welcome to the latest installment of our “Spotlighted Blogger” series. So far, we’ve interviewed patient bloggers living with gastroparesis, type I diabetes, bipolar I disorder, Parkinson’s disease and ALS, and today we introduce Alisha B., who felt alone in her struggles with psoriasis until “coming out” on her blog, Being Me in My Own Skin. Alisha is currently participating in… Continue reading Spotlighted Blogger: Psoriasis Patient Alisha B. of “Being Me in My Own Skin”
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.
ALS Patients Reporting Their Health Status over the Internet Just as Reliable as a Clinician in a Hospital
At PatientsLikeMe we’ve been collecting self-reported data about patients with ALS (PALS) since 2006 – over 5,000 PALS to be exact! ALS is a disease that causes muscle wasting in the arms, legs, head and chest, which leads to problems walking, eating, and even communicating. However, unlike a disease like diabetes where there’s a blood… Continue reading ALS Patients Reporting Their Health Status over the Internet Just as Reliable as a Clinician in a Hospital
Love Your Scars: An Interview with Transplant Recipient Amy Tippins
After five years of dealing with undiagnosed multiple hepatic adenomas (hemorrhaging tumors), PatientsLikeMe member Amy Tippins underwent a liver transplant in 1993. Two years ago, she received a ligament allograft using donor tissue. How does she feel about it all today? Check out our interview with this transplant activist to learn how these experiences led… Continue reading Love Your Scars: An Interview with Transplant Recipient Amy Tippins
Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy
You may remember our interview with ALS advocate Debra Quinn from last fall. Today, we’d like to introduce you to another ALS patient activist in our midst: Tom Murphy, a PatientsLikeMe member since January 2011. As part of the ALS Treat Us Now nonprofit group, Tom and several other ALS patients around the country have… Continue reading Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy
Spotlighted Blogger: Parkinson’s Patient Steve Ploussard of “Attitude & Fitness Wins”
Last week we kicked off a new blog series featuring patient bloggers, and today, we’re pleased to present our second installment. Please meet Steve Ploussard, a longtime PatientsLikeMe member who writes a blog about living with Parkinson’s disease (PD) called “Attitude & Fitness Wins.” Steve decided that blogging was the perfect way to “come out”… Continue reading Spotlighted Blogger: Parkinson’s Patient Steve Ploussard of “Attitude & Fitness Wins”
Spotlighted Blogger: Bipolar patient Andrea of “Lithium and Lamictal”
How do we know we’re truly living in a Health 2.0 age? Recently, we’ve discovered that a number of PatientsLikeMe members have fascinating blogs chronicling what it’s like to live with their respective health conditions. For example, we told you in August about the acclaimed gastroparesis blog “My Broken Stomach,” written by one of our… Continue reading Spotlighted Blogger: Bipolar patient Andrea of “Lithium and Lamictal”
PATIENTSLIKEME AND R.A.R.E PROJECT UNITE TO FIND AND CONNECT ONE MILLION RARE DISEASE PATIENTS
FOR IMMEDIATE RELEASE Nonprofit and “Not Just for Profit” Announce Collaboration at PartneringForCures Event NEW YORK, NY – November 7, 2011 – Today, PatientsLikeMe and R.A.R.E Project, a nonprofit advocacy and support group for patients with all rare diseases, announce a new partnership to find and connect 1 million rare disease patients to share and… Continue reading PATIENTSLIKEME AND R.A.R.E PROJECT UNITE TO FIND AND CONNECT ONE MILLION RARE DISEASE PATIENTS
MS PATIENTS PERCEIVE COPAXONE EFFICACY AND TOLERABILITY AS COMPARABLE TO REBIF AND AVONEX
FOR IMMEDIATE RELEASE PatientsLikeMe Continues Report Series on Real-World Patient Experiences with Multiple Sclerosis Medications CAMBRIDGE, MA – November 3, 2011 – In the second report of a series on Multiple Sclerosis (MS) disease modifying therapies (DMTs), PatientsLikeMe reveals that MS patients perceive Copaxone as having comparable efficacy and tolerability profiles to the interferon therapies… Continue reading MS PATIENTS PERCEIVE COPAXONE EFFICACY AND TOLERABILITY AS COMPARABLE TO REBIF AND AVONEX
Competing Against MS: An Interview with MLR
PatientsLikeMe member MLR was an avid BMX (Bicycle Motocross), MTB (Mountain Bike Racing) and Motocross athlete his entire life – until he was diagnosed with multiple sclerosis (MS) last year. After having to give up the sport he loved, MLR began to suffer from depression. Today, however, he’s happy to report that he’s racing again… Continue reading Competing Against MS: An Interview with MLR
FDA’s New Guidance on Patient-Reported Outcomes
We’re big fans of patient-reported outcomes (PROs) here at PatientsLikeMe, defined by the Food & Drug Administration (FDA) as: “A measurement based on a report that comes directly from the patient about the status of a patient’s health condition without amendment or interpretation of the patient’s response by a clinician or anyone else.” The self-report… Continue reading FDA’s New Guidance on Patient-Reported Outcomes