It’s been 23 years since the U.S. Congress first recognized May as ALS Awareness Month in 1992, and while progress towards new treatments has been slower than we’ve all hoped, a lot has still happened since then. In 1995, Riluzole, the first treatment to alter the course of ALS, was approved by the FDA. In… Continue reading What can you do to challenge ALS in May?
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.
Update and results – the Patient Voice Analysis study
About a year ago, the PatientsLikeMe Parkinson’s disease (PD) community started something totally different: a study to compare the sound of their voices to their self-reported PD Rating Scale (PDRS) on PatientsLikeMe. It’s called the Patient Voice Analysis (PVA), and we teamed up with you, Max Little, Ph.D. and Sage Bionetworks to get it done.… Continue reading Update and results – the Patient Voice Analysis study
“Don’t go it alone” – IPF member Christine shares about her health journey
Christine_Williams was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2009, and ever since, she’s been managing a “rollercoaster ride that’s terrifying and not fun.” But she’s connected with your community on PatientsLikeMe for inspiration and was even referred to a new medical center to be evaluated for a lung transplant by her “rehabilitation buddies.” Below,… Continue reading “Don’t go it alone” – IPF member Christine shares about her health journey
PatientsLikeMe member TMurph58 shares about his advocacy efforts and journey with ALS
TMurph58 is a longtime PatientsLikeMe member who is living with ALS. You may remember him from his 2012 interview, when he talked about the “Treat Us Now” movement and his experiences with ALS. We recently caught up with Tom, and he shared about his extensive advocacy efforts over the past few years, including his recent… Continue reading PatientsLikeMe member TMurph58 shares about his advocacy efforts and journey with ALS
Recognizing the signs of IBS
Did you know that between 25 and 45 million people in the United States have IBS, but that many do not seek medical care for their symptoms?1 Are you one of them? Improved knowledge about IBS could lead to better treatments and care, and that’s why the International Foundation for Functional Gastrointestinal Disorders (IFFGD) has… Continue reading Recognizing the signs of IBS
You can make a difference in April
Eight years ago this April, the PatientsLikeMe Parkinson’s disease (PD) community launched, and now, more than 12,500 people are sharing about what it’s like to live with PD. What better way to recognize this awesome community than to participate in Parkinson’s Disease Awareness Month? Listen to Leslie Chambers, the president and CEO of the American… Continue reading You can make a difference in April
Taking control: from PatientsLikeMe member Letitia and our friends at the Partnership to Improve Patient Care
Many of you have already met Letitia. She’s part of the PatientsLikeMe epilepsy community, and from her Patient Voice video to Twitter (@Pulchritude81), she continues to be a rockstar when it comes to sharing her experiences and advocating for patient centered research. Her latest efforts focused on patient empowerment where she headlined a webinar with our friends at… Continue reading Taking control: from PatientsLikeMe member Letitia and our friends at the Partnership to Improve Patient Care
“ALS is not for sissies.” – PatientsLikeMe member SuperScout shares about her journey with ALS
That’s what SuperScout likes to tell people when explaining her personal motto. She was diagnosed in 2009, and in a recent interview, she explained how she takes her life one day, and sometimes one hour, at a time. In her interview, she broke down what goes on during a typical visit to her ALS clinic,… Continue reading “ALS is not for sissies.” – PatientsLikeMe member SuperScout shares about her journey with ALS
Getting to know our Team of Advisors – Deb
You’ve been introduced to five members of the PatientsLikeMe Team of Advisors so far: Karla, Emilie, Becky, Lisa and Dana. This month, meet Deb, a freelance medical writer who was diagnosed with multiple sclerosis (MS) in 2009. Learn about her journey and what being a part of the Team of Advisors means to her. About… Continue reading Getting to know our Team of Advisors – Deb
“Focus on making small but meaningful changes” – an interview with Amy Campbell
Amy Campbell is a registered dietitian nutritionist and certified diabetes educator at Good Measures, a company that combines the expertise of dietitians with state-of-the-art technology to help people improve their eating and exercise habits. Before joining Good Measures, Amy worked for almost 20 years at Joslin Diabetes Center, an internationally recognized diabetes treatment, research and education… Continue reading “Focus on making small but meaningful changes” – an interview with Amy Campbell