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Let’s talk about men’s health

On average, American men live sicker and die younger than American women. Men die at higher rates than women from the top 10 causes of death, and by the age of 100 women outnumber men eight to one1. Sometimes men just don’t talk about their health problems. Or they might not go to the doctor or for their health screenings as often as women2. This month is National Men’s Health Month and it’s a time to raise awareness and encourage early detection and treatment of preventable disease among men and boys. There are several ways to get involved and join in the conversation. If you’re looking for a place to start, here are a few ideas: Join the Men’s Health Forum discussions Men make up 29 percent of PatientsLikeMe – and 81 percent of these members are sharing about their conditions, tracking their symptoms and connecting with one another in the men’s health forum. If you’re interested in learning more, visit today. Wear something blue The Men’s Health Network (MHN) is encouraging everyone to wear blue and share their pictures with the #showusyourblue hashtag on social media. Research the facts Learn about Key Health Indicators, common men’s health conditions and leading causes of death …

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Getting to know our Team of Advisors – Charles

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 CharlesD): Charles has a diverse background. He served three years in the US Army 75th Ranger Regiment parachuting from the back of C-130 and C-141 aircraft. He built audio/video/computer systems for Bloomberg Business News. He worked as an application systems engineer in banking, as a computer engineer at the White House Executive Office of the President (EOP), and as a principal systems engineer for the US Navy Submarine Launched Ballistic Missiles (SLBM) program. He is currently a contractor providing document imaging Subject Matter Expertise (SME) to the IRS. Charles was diagnosed with MS in July of 2013. MS runs in his family on his mother’s Irish side – he has one uncle and two male cousins with MS. Charles on patient centeredness: With experience in website design, Charles believes patient centeredness is a lot like user centeredness when designing a web site or a portal: …

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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 a part of the Team of Advisors means to him. About Steve (aka rezidew): Steve is a professor of Developmental Psychology at the University of North Carolina at Chapel Hill. He was diagnosed with ALS in the fall of 2013 and his symptoms have progressed with increased debilitating weakness in his arms and hands. He was excited to join us as an advisor to lend his expertise on research methodology to the team. He has authored or coauthored an impressive 6 books, 91 peer reviewed publications, and 26 published chapters. When we talked about giving a background on research methods to the team, Steve said ‘I can teach it.’ He is passionate about helping teach others and believes “as a scientist who has been diagnosed with ALS, I regret having this disorder but I am eager to use my unique perspective to promote and possibly …

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PatientsLikeMe and Partners HealthCare Collaborate to Improve Patient Outcomes

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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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 Fabry. About Amy (aka meridiansb): Amy is currently on the Patient Advisory Board for Amicus Therapeutics where she serves as a patient voice for researchers as they work to develop a new drug for Fabry Disease. Amy is a great champion to have in your corner, with a self-reported ‘wicked sense of humor’, and passion for connecting others to the right resources and information. She has experience advocating for others as a medical social worker, and believes in the importance of getting to know a patient population, writing materials that they can relate to, and understanding how managing their condition fits into their life as a whole. Her tip for researchers and healthcare professionals: “Remember, not everyone fits into neat categories. Those that fall outside of what’s typical can be an invaluable resource when researching a particular condition.” Amy on patient centeredness: “Patient-centeredness means that above …

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PatientsLikeMeInMotion™ 2015: Celebrating 7 years of PatientsLikeMe members giving back to their communities and raising awareness

For those of you who don’t know, our PatientsLikeMeInMotion™ program has been running since 2009—how time flies! Join us in celebrating our 7th year with a recap of 2014, our biggest year so far! Last year, we had the honor of supporting 2192 members across 32 states that participated in a range of events and had a lot of fun along the way! Some of the events included a motorcycle ride, a golf tournament, a MuckFest, a Halloween Run and Relay, and a Cake Sale to boot! If you’re unfamiliar with how it works, check out our guidelines – we sponsor 3-star members (super health data donors) who form teams and fundraise with their local nonprofits. And these advocates receive a donation, free team t-shirts and more! Here’s what some members had to say: “Advocacy is huge, because without voices out there speaking on our behalf, we would never get any funding or support.” “It is thanks to these fundraisers that there are now therapeutic options for patients like us. When I was first diagnosed, there was NOOOOOOOOOOOOOOOOOOOTHING. While there is still no cure, we have evidence that research is making strides and there is greater reason to hope. I have always been …

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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, the first step for most of the more than three million U.S. epilepsy patients. But Letitia, like almost a third of patients with epilepsy, could not find a medication that worked. And so for more than 20 years, Letitia fought a losing battle against epileptic seizures that slowly eroded her quality of life. Finally, at age 31 and desperate for a cure, Letitia took that final dramatic step: brain surgery. This is the story of her journey to become seizure-free. For thousands of epilepsy patients, brain surgery can be the best option to end seizures. But for these patients with uncontrolled seizures, Browne-James’ experience is typical. Most who eventually have surgery wait 15 to 18 years after diagnosis. Researchers estimate that well over 100,000 epilepsy patients are good candidates for surgery. But each year, only about 3,000 receive it. “Surgery is the most dramatic thing you can do …

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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. A little bit of background Dr. Little had done some earlier work and compared the voice signals of people who were living with PD to those of people who were not, but we wanted to take that to the next level. With their PDRS, they shared how Parkinson’s was affecting them, and we were able to match their self-reported scores to the sound of their voice. By matching a PDRS to voice samples, we might develop the ability to predict PDRS scores (which takes a few minutes to complete) by using the voice test (which only takes a few seconds). We might also be able to detect more subtle changes in people’s Parkinson’s through their voice than we can through the PDRS. This is what Dr. Little is working toward, and all the voice samples you donated will help make it happen. Community results, starting …

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“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, read what Christine shared about her diagnosis, progression and thoughts on living with IPF. Can you share a bit about your diagnosis experience? We’ve heard from many members that finding an official diagnosis isn’t always easy. What that true for you, too?  Mostly no. In March 2009, I contracted pneumonia back to back within 8 weeks. It was around the time when the swine flu became a big deal, and I had visited Cancun, Mexico that year. I wasn’t necessarily in great health but fairly healthy. I had always attributed my shortness of breath to me being overweight. Because of the pneumonia, a CT scan was ordered. Then a bronchoscopy and finally a video assisted lung biopsy. I was diagnosed however right after the bronchoscopy. I started exhibiting shortness of breath symptoms in 2001. Even went through a series of PFTs at the time but …

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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 presentation on patient-focused drug development with Sally Okun, PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety. Catch up on his journey below. Hi Tom! Can you share a little about your early symptoms and diagnosis experience? I think I was very lucky to have a knowledgeable general practitioner – my actual diagnosis only took three months to complete even though I had to see three separate neurologists. My early symptoms started in my right hand with weakness and the atrophy of the thumb muscle – I thought it was carpal tunnel syndrome. How has your ALS progressed over the past few years? Thankfully I have been in the category of a slow progressor: The ALSFRS-R measures activities of daily living (ADL) and global function for patients with Amyotrophic Lateral Sclerosis (ALS). The ALSFRS-R provides a physicians-generated estimate of patient’s degree of functional impairment, which …

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