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.

Jamie Heywood Is One of Hacking Work’s 100 Great Disruptive Heroes

How do you define a disruptive hero?  Here is Hacking Work’s three-pronged filter: Disruptive because they are proving conventional wisdom wrong. Heroes because they are changing the rules of the game, for the better. Great because they helped to change us all for the better. Given these demanding criteria, we are pleased to announce that… Continue reading Jamie Heywood Is One of Hacking Work’s 100 Great Disruptive Heroes

The “Immense Benefits” of Online Health Reporting: An Interview with ALS Study Author Dr. Thomas Meyer

Earlier this month, we told you about a new study showing that ALS patients reporting their health status over the Internet (using a rating scale known as the ALSFRS-R) is just as reliable as a trained nurse rating the patient’s score.   Now, we’d like to share our interview with lead study author Dr. Thomas Meyer,… Continue reading The “Immense Benefits” of Online Health Reporting: An Interview with ALS Study Author Dr. Thomas Meyer

Six Days Until the Parkinson’s Unity Walk

Parkinson’s Awareness Month isn’t over yet!  This month-long effort is capped off by the Parkinson’s Unity Walk, which takes place Saturday, April 28th, in New York City’s Central Park. The largest grassroots awareness event for Parkinson’s disease (PD), the Unity Walk is anticipated to attract more than 10,000 participants.  If you’ve never attended something of… Continue reading Six Days Until the Parkinson’s Unity Walk

A Day in the Life of PatientsLikeMe Research Scientist Timothy Vaughan

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features employees from different departments.  So far, we’ve interviewed User Experience Engineer Cris Necochea, Research Assistant Shivani Bhargava and Office Manager Alison Dutton.  Today we hear from Research Scientist Timothy Vaughan,… Continue reading A Day in the Life of PatientsLikeMe Research Scientist Timothy Vaughan

Spotlighted Blogger: Psoriasis Patient Alisha B. of “Being Me in My Own Skin”

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”

Recognizing Autism Awareness Month

Have you seen the awareness ribbon with the puzzle pattern?  It’s the symbol for autism awareness, with the puzzle pieces representing the mystery and complexity of autism spectrum disorders (ASD).  The different colors and shapes also highlight the diversity of families living with this condition, which occurs in 1 in 110 births in the US… Continue reading Recognizing Autism Awareness Month

Making the Impossible Possible: ALS Patient Tony “TEMPT ONE” Quan and the EyeWriter Device

For an ALS patient, an eye gaze system – a type of augmentative speech device that translates eye movements into words – can make it possible to communicate with loved ones when speech is impaired or lost.  But as animation studio owner Mick Ebeling found out, not every patient with advanced ALS has one.  The… Continue reading Making the Impossible Possible: ALS Patient Tony “TEMPT ONE” Quan and the EyeWriter Device

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

Preparing for Life After an Organ Transplant

Last week, we shared our interview with a liver transplant recipient who is living out her dreams post-transplant.  Today we’d like to add the insights of 32 organ transplant recipients who took part in an online discussion hosted by PatientsLikeMe.  Split equally in gender with ages ranging from 25 to 60 years old, our discussion… Continue reading Preparing for Life After an Organ Transplant