We’ll be featuring three Team of Advisors introductions on the blog this month, and first up is Charles, a veteran Army Ranger who is also living with MS. Below, Charles shared about his military background, his thoughts on patient centeredness and how he’s found his second family in the Team of Advisors. About Charles (aka… Continue reading Getting to know our Team of Advisors – Charles
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.
PatientsLikeMe usability study for mobile app
Designing a new app is like designing a car. Your engineer and designer may have done a flawless job, but nothing matters until the person actually steps into the driver’s seat and test-drives the product. So when it came time for us to launch the first pass at our new mobile app, called PLM Connect,… Continue reading PatientsLikeMe usability study for mobile app
Wrapping up Seeing [MS]: The invisible symptoms
Here’s a question we asked last year – how do you explain multiple sclerosis to those who don’t understand? And here are a few answers: “I’m burnt alive every day.” “A single bead of sweat can bring me to my knees.” “I can be struck down in just seconds.” Over the past year, we’ve been… Continue reading Wrapping up Seeing [MS]: The invisible symptoms
Getting to know our Team of Advisors – Steve
A few weeks ago, Amy shared about living with a rare genetic disease in her Team of Advisors introduction post. Today, it’s Steve’s turn to share about his unique perspective as a scientist who has been diagnosed with ALS. Below, learn about Steve’s experience with ALS research, his views on patient centeredness and what being… Continue reading Getting to know our Team of Advisors – Steve
Seeing [MS]: The invisible symptoms – numbness
“When I woke up, my hands were gone.” That’s how Adriana Grasso described the numbness she experiences as part of her MS. It’s so severe that she doesn’t even know what it feels like to hold someone’s hand. As she says, “A simple thing that we take for granted – touch – it’s gone, and… Continue reading Seeing [MS]: The invisible symptoms – numbness
“In my own words” – PatientsLikeMe member Edward shares about living with schizoaffective disorder
Meet Edward, a member of the PatientsLikeMe mental health community. He’s been living with schizoaffective disorder since the late 1970s, and over the past 35 years, he’s experienced many symptoms, everything from paranoia and euphoria to insomnia and deep depression. Below, he uses his own words to take you on a journey through his life… Continue reading “In my own words” – PatientsLikeMe member Edward shares about living with schizoaffective disorder
Schizophrenia: Living well and working towards a cure
Today marks the start of Schizophrenia Awareness Week, and what better way to begin than with the story of an inspiring woman who is living with schizophrenia and advocating for better treatments. Dr. Elyn Saks was diagnosed with schizophrenia as a college student. At first she struggled with her diagnosis, and it took a while… Continue reading Schizophrenia: Living well and working towards a cure
Getting to know our Team of Advisors – Amy
We’re been introducing the PatientsLikeMe Team of Advisors on the blog over the past 6 months, and today, we’re happy to announce Amy, a member living with a rare genetic disease called Fabry. Below, she shares about the importance of being aware of patients as individuals, and how she’s learned to live (and thrive!) with… Continue reading Getting to know our Team of Advisors – Amy
Coming together for immunological and neurological health in May
If you follow PatientsLikeMe on social media, you might have seen a few “Pop Quiz Tuesday” posts. Today, here’s a special pop quiz – what do fibromyalgia, myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) have in common? The answer is that they are classified as Chronic Immunological and Neurological Diseases (CINDs). And since 1992,… Continue reading Coming together for immunological and neurological health in May
A bold choice to fight epilepsy
As originally seen on the Tampa General Hospital News Center website It was scary enough for Letitia Browne-James’ parents to witness their child’s epileptic seizures. But they were also frightened when a doctor suggested brain surgery for their 12-year-old. “My parents said ‘no way,’” Browne-James said. “It was a very scary thought.” They tried medications,… Continue reading A bold choice to fight epilepsy