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
Category: Patient Experiences
Spotlighted Blogger: Interview with Lissa of “Psoriasis Girl’s Point of View”
Want to connect with and learn from psoriasis patients like you? Join PatientsLikeMe Now! (It’s free) Welcome to the sixth 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 Lissa, a PatientsLikeMe member who has lived… Continue reading Spotlighted Blogger: Interview with Lissa of “Psoriasis Girl’s Point of View”
Behind Every Piece of Data Is a Patient
(This post has been repurposed from an article written by PatientsLikeMe’s Ben Heywood for eyeforpharma’s Patient’s Week 2011.) Real-world, patient-reported data is becoming more important to you, the patient, as well as everyone in healthcare. One source of that data is patient registries. According to the US Department of Health & Human Services’ Agency for Healthcare Research… Continue reading Behind Every Piece of Data Is a Patient
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”
Learn from Others with BVVP (Positional Vertigo)
BVVP (more commonly abbreviated as BPPV) stands for benign paroxysmal positional vertigo. A disorder caused by inner ear problems, it is characterized by repeated episodes of positional vertigo that are triggered by repositioning or moving the head. This produces a spinning sensation that disorients the BVVP/BPPV patient. At PatientsLikeMe, patients are sharing their experiences with… Continue reading Learn from Others with BVVP (Positional Vertigo)
What Does it Mean When You Have Cold Legs?
If you’ve experienced cold legs yourself, we encourage you to share your experiences to help other patients. PatientsLikeMe’s unique data-sharing platform allows you to share detailed data about all types of treatments, interventions, and lifestyle modifications that have helped you or simply had no effectHave you suddenly realized that your legs are cold? You’re sitting… Continue reading What Does it Mean When You Have Cold Legs?
Annoyed or Impressed By Your Therapist? PatientsLikeMe Mood Members Chime In
In a recent blog post by New York Times’ Tara Parker-Pope, PsychCentral highlights “The 12 Most Annoying Habits of Therapists.” Launched a year ago this week, our very own Mood community has more than 1,300 patients using “Individual Therapy” as a treatment for their condition. We asked them to tell us some of the habits… Continue reading Annoyed or Impressed By Your Therapist? PatientsLikeMe Mood Members Chime In
We Share Too! Contributing Open Source Code
“Open source software” is created and improved collaboratively, over the web, by the people who need it, even if they work for different companies in different industries on different continents. Similar to our Openness Philosophy, the premise behind open source software is that none of us is as smart as all of us. Software developers… Continue reading We Share Too! Contributing Open Source Code
Let’s make clinical trials more rewarding for patients
I came across this Wall Street Journal article earlier this week which details how patients with life-changing illnesses are using online services such as EmergingMed to help them enroll in clinical trials. The article points out that only 3% of adult cancer patients participate in trials, citing lack of awareness as a crucial factor. They… Continue reading Let’s make clinical trials more rewarding for patients
PatientsLikeMe Featured in New York Times Magazine
In one of the greatest honors in our young company to date, PatientsLikeMe was featured in today’s New York Times Magazine. The article, entitled Practicing Patients, appropriately discusses the pros and cons associated with sharing data-rich personal health information in an open community. PatientsLikeMe seeks to go a mile deeper than health-information sites like WebMD… Continue reading PatientsLikeMe Featured in New York Times Magazine