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PatientsLikeMe and Partners HealthCare Collaborate to Improve Patient Outcomes

1 Comment / Patient Experiences / By

CAMBRIDGE, MA., May 26, 2015 – PatientsLikeMe and Partners HealthCare announced today that they are working together to give Partners HealthCare patients access to tools and information that can help improve decision making with their clinical teams and enhance health outcomes. PatientsLikeMe Executive Vice President of Marketing and Patient Advocacy Michael Evers said the agreement is the first to provide access to the website from within a provider’s patient portal. “We’re excited to work with such an esteemed health system to help patients and their care teams have a more complete understanding of patients’ whole health experience, and to support shared decision making about next steps.” Partners Population Health Management Associate Medical Director Adam Licurse, MD, MHS, who is a leader in population health patient engagement efforts at Partners, added the agreement is a key building block towards the healthcare system’s vision for better involving patients in their care. “We know that as patients become more engaged in their care, they have better care experiences, make more informed decisions based on their goals, and in some cases can actually receive higher value care at the end of the day. Peer mentorship, patient self-management, and patient education are all critical pieces to …

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Seeing [MS]: The invisible symptoms – numbness

Multiple Sclerosis, Patient Experiences / By

“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 there is a barrier there.” Listen to Adriana speak about her symptom below: You are now seeing numbness Photographed by Nicholas Walton-Healey Inspired by Adriana Grasso’s invisible symptoms Adriana worked with photographer Nicholas Walton-Healey to portray her numbness in a picture and video. Their work is part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts. Share this post on Twitter and help spread the word for MS.

“In my own words” – PatientsLikeMe member Edward shares about living with schizoaffective disorder

7 Comments / Mental Health, Patient Experiences / By

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 with schizoaffective disorder, including a detailed account of what happened when he stopped taking his medications and how he has learned to love God through loving others. How it all began: In my early twenty’s in 1977, I was doing GREAT in college, double majoring in Mathematics and Electrical Electronic Engineering and in the top 1% of my class when I started having problems with mental illness. My first symptom was an intense mental anguish as if something broke inside of my head. Then my sleep started to suffer and I would fall asleep in my college classes, which was not at all like me. Then I started having strong mood swings and I became very delusional. I experienced all of this without the use of any drugs or alcohol; in fact I have never used any street drugs or alcohol. Life became HELL and …

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Coming together for immunological and neurological health in May

Fibromyalgia, Patient Experiences / By

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, every May 12th has been recognized as International Awareness Day for CINDs. Today, in conjunction with Fibromyalgia Awareness Month, it’s time to recognize everyone living with a CIND. While fibromyalgia and ME/CFS are both CINDs, each is a little different. Check out some quick facts about each condition: Fibromyalgia1 Affects 5 million Americans over the age of 18, and the majority are women The cause of fibromyalgia is unknown Common symptoms include insomnia, headaches, pain and tingling in the hands and feet ME/CFS2 Affects between 836,000 to 2.5 million Americans The large majority of people living with ME/CFS have not been diagnosed There are five main symptoms of ME/CFS, as opposed to the more general symptoms of fibromyalgia: Profound fatigue that impairs carrying out normal daily activities Unrefreshing sleep Cognitive impairment Symptoms that worsen when a person stands up Symptoms that worsen after exerting any …

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PatientsLikeMe study monitors walking activity in people with MS

Patient Experiences / By

           Cambridge, MA, April 15, 2015—PatientsLikeMe today announced results of a novel study conducted with Biogen that showed how people living with multiple sclerosis (MS) can use wearable activity tracking devices to collect and share their mobility data, which could potentially provide relevant information to their clinicians and to other MS patients. These data are being presented at the 67th American Academy of Neurology’s (AAN) Annual Meeting in Washington, DC April 18-25. “MS impairs the ability to walk for many people with MS, yet we only assess walking ability in the limited time a patient is in the doctor’s office,” said Richard Rudick, MD, vice president, Value Based Medicine, Biogen. “Consumer devices can measure number of steps, distance walked, and sleep quality on a continuous basis in a person’s home environment. These data could provide potentially important information to supplement office visit exams.” The study was designed to assess the feasibility of using a consumer wearable device to monitor activity among people with MS in a real-world setting. In it, 248 PatientsLikeMe members were provided with Fitbit One™ activity trackers. Of those who received them, 213 (82%) activated the device with the Fitbit website and authorized …

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Seeing [MS]: The invisible symptoms – balance

Patient Experiences / By

Describing her loss of stability and balance is difficult for Carol Cooke. One moment, she might be walking, and the next, she’ll fall to the ground. As she says, “I just want to get up and keep going,” but that’s not possible due to the symptoms of her multiple sclerosis (MS). Listen to Carol speak about her MS below: You are now seeing balance Photographed by Andreas Smetana Inspired by Carol Cooke’s invisible symptoms To help others understand this, she worked with photographer Andreas Smetana to portray her MS symptom in the picture above. Her video and picture are part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts. Share this post on Twitter and help spread the word for MS.

“ALS is not for sissies.” – PatientsLikeMe member SuperScout shares about her journey with ALS

ALS / By

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, and shared how technology has been simultaneously frustrating and extremely helpful. Learn about her journey below. When did you first experience symptoms of ALS? In August 2008, I was attending a Girl Scout event. As we recited the Promise, I noticed my fingers weren’t making the sign correctly. Over the next few months, I began to lose the fine motor skills in my right hand. Writing was hard, & I started using my left hand for most things. I thought I had some form of carpal tunnel. I had NO pain, so I wasn’t concerned. In December 2008, I went to my family doctor for my annual check-up. I told him my problems & he sent me for an electroencephalogram (EEG). That began the series of tests that eventually led to my diagnosis in April 2009. How did you feel after being officially diagnosed? And …

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Myths vs. facts about multiple sclerosis

3 Comments / Multiple Sclerosis, Patient Experiences / By

Stop! What do you know about multiple sclerosis (MS)? That’s the question we’re asking during MS Awareness Month. We’ve heard from many community members that people don’t always get what it’s like to live with MS, and that there’s wrong information out there. So as part of ongoing awareness efforts, we created shareable photos that will hopefully dispel some of the myths surrounding the neurological condition. There are 13 shareable infographics in total – click here to view the gallery.  Don’t forget to use the #MSawareness hashtag when you post on your Facebook or Twitter. Let’s kick things into high gear and start dispelling myths about MS this month so that everyone is armed with better information all year round. What’s the community saying? “The stigma associated with MS far outweighs any benefits that come from awareness, from my personal experience. To be very honest, no one cares unless it happens to them, and people perceive being sick as a weakness” -MS forum thread “I have only been offended two times in 20 years by strangers. Family, now that’s a different story – stigma runs rampant there when it comes to MS.” -MS forum thread “A society that attaches a …

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March is Multiple Sclerosis Awareness Month

2 Comments / Multiple Sclerosis, Patient Experiences / By

Multiple sclerosis (MS) affects more than 2.5 million people worldwide, and in the United States alone, about 200 new people are diagnosed each week. Those are just a couple of the many reasons why the Multiple Sclerosis Association of America (MSAA) recognizes March as Multiple Sclerosis Awareness Month. What more do we know about MS? Doctors are unsure of the root cause of the condition, but women are twice as likely as men to develop MS. Additionally, the farther away from the equator you live, the greater likelihood you’ll experience MS – overall, your lifetime chance of developing MS is about 1 in 1,000.1 Did you know that there are four different types of MS? Each one affects people a little differently. Relapsing-remitting MS (RRMS) affects the large majority (85 percent) of MS patients, and this type features clearly defined periods when symptoms get worse and activity decreases. Primary-progressive MS (PPMS) causes a clear progression of symptoms and equally affects men and women. Secondary-progressive (SPMS) is a form of PPMS which is initially diagnosed in only about 10 percent of patients. Progressive-relapsing MS (PRMS) is found in only 5 percent of MS patients, but these people have both clear relapses …

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Seeing [MS]: The invisible symptoms – brain fog

Multiple Sclerosis, Patient Experiences / By

Australian Jessica Anderson has been living with multiple sclerosis since she was 12 years old, and she says brain fog is the scariest symptom she experiences, especially not being able to gather and make sense of her own thoughts. During her worst moments, she can barely focus on a thought for more than 30 seconds. Listen to Jessica speak about her symptoms below.   You are now seeing brain fog Photographed by Sara Orme Inspired by Jessica Anderson’s invisible symptoms Jessica and New Zealand photographer Sara Orme worked together to visualize Jessica’s brain fog, and her video and picture are part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts. Share this post on Twitter and help spread the word for MS.

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