Did you catch the pre-game show before Sunday’s Super Bowl XLVI? If not, you missed a beautiful NBC piece about Steve Gleason, who spent seven seasons as a safety with the New Orleans Saints.
Diagnosed with ALS a year ago, Gleason now walks with a cane, and his speech has been impacted. The new father remains upbeat, however, and has thrown his energy into ALS advocacy work through Team Gleason. (One recent project: bringing two ALS patients to the Super Bowl to fulfill their lifelong dream.)
Tune in below for the full NBC profile, which includes an interview with Steve, 34, and his wife, Michel:
Steve’s story reminded us of two topics covered on our blog last year. During the NBC piece, Michel states that one of her biggest fears is Steve losing ability to speak. This devastating aspect of ALS recently came up in our interview with ALS blogger Rachael, who discussed how important her eye gaze system (which translates eye movements into words) has been since losing her speech. She says, “It allows me to converse on an almost level footing, conveying thoughts and observations, expressing myself in my own style with all its complexities and idiosyncrasies.”
Finally, Steve is another example of an athlete being diagnosed with ALS, just like baseball player Lou Gehrig, who is indelibly associated with the disease. The NBC piece explores the potential connection between impact sports and neurological diseases. Other researchers, such as Dr. Martin Turner, are investigating a possible link between ALS and athleticism in general. Check out our post “ALS and Athleticism: What Have We Learned?” to hear more about Dr. Turner’s research and how PatientsLikeMe data on ALS handedness (i.e. which hand is dominant) has contributed to it.
Are you one of the roughly 700 patients with psoriasis at PatientsLikeMe? We’ve got some exciting new features just for you.
At the end of 2011, we unveiled the Dermatology Life Quality Index (DLQI), a new 12-question survey that helps you measure how psoriasis affects your day-to-day life. Answer the questions regularly to produce a graph (see above) showing how things are changing over time. That way, you’ll be able to see how various treatments and interventions are impacting your quality of life.
Another new feature is the Body Surface Area (BSA) lab test, which measures the percentage of your skin affected by psoriasis. Not sure how to approximate that? Your palm (including fingers) represents about 1% of your body surface area, so use that as a proxy. How many palms would equal the area of your body affected by psoriasis? If it’s 15 palms, for example, that would be equal to 15% of your body surface area.
Finally, if you have listed psoriasis as your primary condition (and more than 350 of you have), you may have noticed that you have a brand new patient icon or “nugget.” It displays your latest DLQI and BSA scores as well as your age, gender and latest InstantMe status (e.g. “Very good” in the example shown to the left).
So, what do you think of these new features? Have you tried them out? We’d love to hear your thoughts and feedback.
Last November, we shared our takeaways from TEDx Cambridge, a one-day event featuring 30+ speakers and lots of Ideas Worth Spreading (TED’s mission). The theme for this particular gathering was “Thrive.” How can we as individuals – and communities – not just survive but thrive?
One of the speakers to take a crack at that question was PatientsLikeMe Co-Founder and President Ben Heywood, who talked about the story behind PatientsLikeMe. In addition to sharing how it all began with his brother Stephen’s diagnosis with ALS, and what PatientsLikeMe is trying to do (“a revolution of openness”), Ben focused on how we can thrive as a company against big expectations – both external and internal.
Tune in to the video below to find out just that. Congrats to Ben on an inspiring talk – not to mention his standing ovation!
Many people look at a new year as a fresh start - a chance to begin new routines, eliminate bad habits and shift priorities. But not everyone believes in making resolutions.
Here are several different patient perspectives on approaching the new year:
“In 2012, I will make daily exercise a priority. Research reveals it is the one thing that may slow disease progression. It also improves overall health and makes us look and feel better.” - Patient with Parkinson’s disease
“I am filled with great hope for us all. In 2011, the pace of research breakthroughs increased dramatically. Most importantly, new research modalities using human tissue have been developed and are already contributing to major breakthroughs in understanding the biopathways affecting ALS. We are closer to a cure than ever.” - Patient with ALS
“My resolutions are pretty simplistic: Sleep hygiene and getting more (sleep, that is). Discontinuing the practice of making long and unrealistic to-do lists. I’ll start with sleep and go from there.” - Patient with major depressive disorder
“I have no expectations that this new year will be any better then the last. That way I don’t get disappointed so whatever does happen will be a bonus.” - Member with Wegener’s granulomatosis
“I’m going to cut out sugar and white flour foods. I know, I know, I’ve said this before and I’ve done this before, and it’s really hard for me, but it works for weight loss and being able to tap into my energy. So here we go again, looking towards a healthier 2012.” - Patient with fibromyalgia
“My resolution is to do more, no matter what it is. Smile more, laugh more, cry more, walk more, yoga more, love more, hug more, write more, hurt more, sing more, read more…you get the idea. I figure more means I’m alive, less may mean I’m dying.” - Patient with Parkinson’s disease
What will you be doing differently in 2012 - if anything? Share your thoughts in the comments section and read more about exercise, diet and sleep at PatientsLikeMe.
Taking a look at the makeup of our PD community, 52% are male, and 48% are female. More than 98% identify PD as their primary condition, and just shy of 20% report experiencing their first symptom between the ages of 50 and 59. Others report experiencing their first symptom anywhere from adolescence to their seventies. (See the chart for a complete breakdown.) What exactly are the symptoms of this condition? Some of the most commonly reported include stiffness/spasticity, slowness, sexual dysfunction, memory problems, excessive daytime drowsiness and constipation.
As Steve’s interview revealed, Carbidopa-Levodopa (Sinemet) is one of the most commonly prescribed treatments for PD as it helps to control tremors, one of the most visible manifestations of the disease, and other movement dysfunctions. Currently, more than 1,698 members report taking this medication, and 300+ of them have submitted Sinemet treatment evaluations, which review the drug’s effectiveness, side effects, dosage, cost and more. Here’s what one patient writes about Sinemet on her evaluation: “I notice my leg limp and motivation to walk improves dramatically when it kicks in. The tremor is much less.”
What’s it like to work at PatientsLikeMe? We’ll be revealing just that with our new blog series “A Day in the Life,” which features various employees from different departments. To start this new series off with a veteran perspective, we interviewed Research Scientist Mike Massagli, PhD, one of the longest tenured employees of the company. Find out what changes he’s witnessed since joining PatientsLikeMe in June 2007.
1. What’s it been like to watch the company evolve over the last four years?
It has been both interesting and gratifying. Interesting to watch how we evolved from our initial communities – ALS, MS and Parkinson’s, all essentially neurological conditions – to come to grips with other types of chronic disease and to try and achieve a necessary balance between general tools that would be useful to any patient and disease- or condition-specific tools that will be relevant to patients when they are needed. What has been gratifying is that we have always been able to find people to rise to these challenges. We’ve found users of PatientsLikeMe very willing to help (and forgiving when things haven’t gone perfectly smoothly), so that we are now in a position to provide all patients with the potential benefits of PatientsLikeMe.
That’s still a work in progress, of course, but the site is getting better all the time. I am optimistic that we are getting closer to realizing the ultimate power of PatientsLikeMe, which is to fully show the distribution of responses to treatments and help match patients to the part of that distribution that is actually relevant to them.
2. Talk about PatientsLikeMe’s Journal Club speaker series and why you started it.
The Journal Club is something we started in January 2009 to provide some space and time outside of the routine workflow to discuss (usually) substantive topics relating to PatientsLikeMe. The goals include:
giving people who are working on something behind the scenes some visibility and an opportunity for feedback;
sharing research that has implications for the data we collect or how we collect and present it;
talking about features in other websites that could have utility in PatientsLikeMe
sharing information or ideas about how to foster the growth and ‘health’ of online communities; and
presenting intriguing solutions to seemingly technical problems that may have broader implications for the user experience.
We also bring outside speakers who can inform these areas of discourse. Everyone at PatientsLikeMe attends and is enthusiastic about learning and critically examining new ideas and issues.
3. What research projects are you working on at the moment?
At the moment I’m finishing up a couple of projects focusing on the experience of organ transplant patients. For one of them I examined forum posts about issues related to medication adherence, then combined this with a review of the literature and prior measures of adherence problems to design a survey that will provide information describing patient preferences for possible adherence support mechanisms. In the other project, a survey is being conducted to test a range of questions about patient quality of life that will hopefully result in a more patient-centered set of questions than currently exists.
In addition to those projects, I’m looking at survey data about six-month changes in the status of fibromyalgia patients and testing how that is associated with the use of PatientsLikeMe. And I’m working with the team to implement revisions to the Multiple Sclerosis Rating Scale (MSRS).
4. What do you like best about being part of the PatientsLikeMe team?
Being part of the PatientsLikeMe team is a unique opportunity to build something that has the power to vastly improve medicine. By capturing patient reports of their experience of care and treatment on a large scale and in real time, we can improve understanding of how treatments work and for whom they work IRL (in real life), and be a source of information for people that simply has not existed before.
PATIENTSLIKEME POLL REVEALS UPCOMING HOLIDAY SEASON MOST DIFFICULT FOR DIABETES PATIENTS CONTROLLING BLOOD GLUCOSE
PatientsLikeMe Introduces Daily Glucose Monitoring Feature in December
CAMBRIDGE, MA - November 22, 2011 - According to a recent PatientsLikeMe® Poll, one out of every two type 2 diabetes patients (50%) and nearly two out of every three type 1 diabetes patients (65%) say having diabetes affects their holidays. More than half of respondents (59%) say the upcoming holiday season, marked by Thanksgiving and Christmas, is most difficult for controlling blood glucose; 25% don’t find the holidays difficult. When asked what strategies they use if their blood glucose rises after increased consumption during the holiday, diabetes patients had mixed responses with three in four type 1 patients (76%) changing their medication dosage, while type 2 patients try alternative things like more exercise (34%) or just avoiding glucose-raising items altogether (34%). Two hundred and twenty-six (226) diabetes patients sharing their health data on PatientsLikeMe.com responded to the poll.
“This week represents the beginning of a challenging season for diabetes patients faced with group meals and gatherings that could impact their health,” says Ben Heywood, President and Co-founder of PatientsLikeMe. “We all have family or friends with diabetes and these poll results give a glimpse into some of the challenges they face and the strategies they use to overcome them.”
Are diabetes patients sensitive about discussing their disease with family and friends at the table during the holidays? An overwhelming 90% say no. However, more than one in three patients (38%) still feel friends and family don’t understand how diabetes affects them during the holidays. With holiday meals and parties so prevalent over the next six weeks, many of the respondents (84%) say they manage with what’s available, while 16% make some adjustment to accommodate for their diabetes (7% host to be in control, 7% eat before going out and 2% bring their own meal).
PatientsLikeMe will introduce a daily blood glucose monitoring feature for its 2,000+ diabetes patients in early December. Patients will be able to report daily glucose levels, as well as continue sharing and learning from HbA1c scores (used to monitor the glucose control of diabetics over time), treatments and dosages (such as Metformin or insulin) and symptoms and severity (including blurry vision,excessive thirst and fatigue). In recognition of Diabetes Awareness Month, PatientsLikeMe recently collaborated with industry and nonprofit partners to launch the CallingAllTypes (www.callingalltypes.com) campaign in an effort to help raise awareness and funds for the disease.
NOTE TO EDITOR: The complete PatientsLikeMe® Poll results can be downloaded here. All poll results must be sourced as originating from PatientsLikeMe®.
PatientsLikeMe® Poll Methodology Between November 14th and November 18th, PatientsLikeMe invited all diabetes members to participate in the PatientsLikeMe® Poll, with 226 members completing the poll. Respondents represent patients with both type 1 diabetes (24%), where patients are usually diagnosed at a young age and need to daily blood glucose monitoring and insulin therapy, and type 2 diabetes (73%), where patients develop the condition gradually over time typically due to environmental factors resulting in increased blood glucose levels. In this poll, more than 200 respondents shared their HbA1c scores, with 49% reporting a score of 7.0 or lower (which represents well-controlled glucose).
About PatientsLikeMe® PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]
Today is World Diabetes Day, sponsored by the International Diabetes Federation. An official United Nations Day since 2007, World Diabetes Day is held every year on November 14th to commemorate the birthday of Frederick Banning. Along with Charles Best, Banning is credited with the life-saving discovery of insulin in 1922.
Why is there a need for a global diabetes day? As the United Nations wrote in their 2007 resolution, diabetes is “a chronic, debilitating and costly disease associated with major complications that pose severe risks for families, countries and the entire world.” Namely, it is the cause of four million deaths worldwide every year, with someone dying every eight seconds from the disease.
The global symbol for diabetes awareness is a blue circle, and supporters everywhere are encouraged to wear blue today to help spread the word about this pandemic. You can also help get the message out about prevention. While type 1 diabetes cannot be prevented, research shows that, in many cases, type 2 diabetes can be prevented by maintaining a healthy weight and being physically active. Regular walking for at least 30 minutes per day, for example, has been shown to reduce the risk of type 2 diabetes by 35-40%.
We recently highlighted type 1 diabetes (and how it differs from type 2) in our blog post, “American Diabetes Month Kicks Off with T1 Day,” as well as our two-part interview with type 1 patient Michael Burke. Here’s a little more information about type 2 diabetes, which accounts for at least 90% of all diabetes cases worldwide. At PatientsLikeMe, 1,773 patients report type 2 diabetes, with 68% of them female and 32% male. One of the most commonly reported treatments is Metformin, an oral anti-diabetic medication prescribed when hyperglycemia (high blood sugar) due to diabetes cannot be controlled through exercise and diet alone. What do patients say about this drug? Check out the 125 treatment evaluations submitted by our members, who share their experiences with dosage, side effects, efficacy, cost and more.
With a staggering 366 million people diagnosed with diabetes worldwide – and another 300 million at risk – it’s imperative that diabetes awareness and knowledge grow faster than the disease itself. The new “Calling All Types” diabetes awareness campaign – an initiative of PatientsLikeMe and our partner BBK Worldwide – helped mark World Diabetes Day this past weekend at the Diabetes University 2011 event in Atlanta, Georgia. Now in its 18th year, this event works to educate both medical professionals and the public. Given that the prevalence of diabetes in Atlanta is a full point higher than the national average, Calling All Types has made Atlanta the focal point of the campaign’s initial awareness-raising activities.
Are you a type 1 or type 2 diabetes patient? Share your story at CallingAllTypes.com in honor of World Diabetes Day. For everyone else, “act now” by wearing blue, talking about type 2 diabetes prevention or simply taking a walk around your neighborhood.
Nonprofit and “Not Just for Profit” Announce Collaboration at PartneringForCures Event
NEW YORK, NY - November 7, 2011 - Today, PatientsLikeMe and R.A.R.E Project, a nonprofit advocacy and support group for patients with all rare diseases, announce a new partnership to find and connect 1 million rare disease patients to share and learn everything possible about their conditions. The organizations, co-presenting at the PartneringForCures event today in New York, are launching an international rare disease awareness campaign in 2012.
“There are 35 million patients in the U.S. with 7,000+ rare diseases and we want to find them, connect them and support them in sharing and learning by their specific disease and across all rare diseases,” says Dean Suhr, Chief Innovation and Community Development Officer at R.A.R.E. “We’re excited to work with PatientsLikeMe because their open patient registry allows patients to contribute to research, while getting immediate benefits, like improved quality of life, from sharing this information with others.”
The goal of this collaboration between R.A.R.E and PatientsLikeMe, an online health community that started in 2005 for rare disease patients and is now open to everyone, is to allow for better shared learning and acceleration of discovery by rapidly connecting patients to researchers, companies, nonprofits and patients like them. The partners will combine resources to provide patients with the opportunity to make online and local in-person connections, engage nonprofits and local specialists, and contribute their health data to the open patient registry at PatientsLikeMe. Unlike other registries, PatientsLikeMe allows patients to query the data to compare their medical data to others with similar diseases, symptoms, or therapies so they can also compare their data across other diseases.
“The key to accelerating research for any patients, although particularly powerful for those with rare conditions, is to have efficient access to well characterized patient populations willing to be part of research,” adds Jamie Heywood, Co-founder and Chairman of PatientsLikeMe. “It’s terrifying to think you’re alone and manage your rare illness with a doctor who might not have ever seen another patient like you. We will change that.”
For more about the R.A.R.E Project, including current awareness campaigns, go to: http://rareproject.org. For patients and nonprofits that want to join PatientsLikeMe, go to http://www.patientslikeme.com.
ABOUT R.A.R.E PROJECT
The R.A.R.E. Project exists to raise rare disease awareness, unify and empower a vibrant global rare disease community, and fund innovations to support ‘in-their-lifetime’ rare disease research.
ABOUT PATIENTSLIKEME
PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]
On October 24-25th, PatientsLikeMe attended the 8th Annual Patient Adherence, Communication and Engagement (PACE) Conference in Philadelphia. The event focused on how the healthcare industry can deliver measurable improvements in patient adherence (i.e., taking medications as prescribed by your doctor). Put simply, how can we help patients like you take the correct dosages at the correct times?
Why does this topic merit its own conference? Well, as we learned at PACE, medication non-adherence costs more than $300 billion every year in the US alone. You read that right. And this staggering amount is comprised of more than just hospitalization and emergency room costs. It also includes things like lost employee productivity and the cost for less optimal patient outcomes. Essentially, think of it as $300 billion the US could be saving each year - but currently is spending - in the midst of an economic downturn.
Here are some of the other noteworthy takeaways:
Of that $300 billion, more than $100 billion is concentrated in four cardio-metabolic disorders: diabetes, hypertension, high cholesterol and heart disease.
A key factor in non-adherence is that patients may frequently have an incorrect understanding or an unrealistic expectation from their doctor of what their medications will do for them.
Recently passed US legislation is attempting to change the way doctors are paid. The new law provides financial incentives for health plans to implement quality measures that hold doctors accountable for impacting patient outcomes.
Many new solutions, such as telemedicine and the patient-centered medical home, are being piloted and studied. The goal is to learn how technology can impact patient outcomes via medication adherence services and remote medical care.
To remain relevant to patients, biopharmaceutical companies now recognize that they must incorporate the voice and experience of the patient into their decision-making processes.
Last but not least, our very own Chief Marketing Officer and Head of Business Development David S. Williams III spoke about the work PatientsLikeMe is doing around medication adherence. Specifically, he focused on patient-to-patient interaction as an influential driver of medication adherence and how we can give patients the tools they need to (1) understand how their medication is working for them and (2) hold each other accountable for following their doctors’ instructions.
Do you believe connecting with - and learning from - other patients is critical to adherence? Share your thoughts in the comments section.
Last night, the PatientsLikeMe team came together for a great cause: the “White Coat Affair” gala benefit in support of the ALS Therapy Development Institute (ALS TDI). Founded by PatientsLikeMe Co-Founder and Chairman Jamie Heywood in 1999, ALS TDI is the world’s most advanced research laboratory dedicated to ALS.
Held the night before the institute’s 7th Annual Leadership Summit, the gala event included the presentation of the first-ever “ALS TDI Lou Gehrig Award” to US Congressman Michael Capuano as well as special recognition for ALS TDI Chairman of the Board Augie Nieto, who has raised more than $30 million for the institute since 2007.
Congratulations to ALS TDI on 12 years of cutting-edge research and leadership.
The 12th International Congress for Human Genetics (ICHG) was a fantastic learning experience with 7,200 geneticists, doctors and researchers in attendance – making it the largest ICHG ever. The talks were of the highest quality, and the latest genetics research was presented and discussed. It was an honor to give one of these presentations, since only 8% of those who applied were awarded the opportunity.
That brings me to the main purpose of this blog post: A big THANK YOU to the members of PatientsLikeMe.Your data made our presentation possible.I spoke about the ALS pilot program for genetics entry and search functionality, which allows ALS patients to enter their causative genetic mutations (such as SOD1 A4V, SOD1 D90A and VAPB P56S)and find others with the same genetics.It was a groundbreaking project, and we hope to implement it site-wide in the near future.
I also presented some of the key results from our recent survey on genetic testing:
16% of you have had some form of genetic testing.
Of those who have been tested, 31% have had a direct-to-consumer genetic test.
If cost were NOT a consideration, 83% of you would be at least moderately interested in getting a comprehensive personal genetic test.
68% of you said you would be at least moderately interested in finding others with the same genetics as you.
Thanks again for your participation in the survey, for being members of PatientsLikeMe and for sharing in our research efforts.I hope that next year I’ll be presenting PatientsLikeMe’s site-wide genetics functionality.
In August, we proudly announced that our Research & Development Director, Dr. Paul Wicks, PhD, had been named “Humanitarian of the Year” and a TR35 Honoree by MIT Technology Reviewmagazine.This week, he received both awards at MIT’s annual Emtech event, a two-day conference focused on emerging technologies held at MIT’s Boston campus.
Below are links to a few videos highlights from the event, including the award presentation on Tuesday night. As you’ll hear in the organizer’s introduction, the criteria for TR35 (the best young innovators under the age of 35) is to recognize individuals who are doing transformative work.“They are presenting a concrete solution to a big, almost ideally civilization-scale problem.”MIT Technology Review then names one TR35 recipient as “Humanitarian of the Year” to recognize the use of technology in “progressing the human condition.”
What does Paul have to say about receiving this incredible honor?Jump to the 3:40 mark in the video below to see his onstage interview and award presentation.
Gluten-free products are now readily available in many grocery stories – and for good reason.One in 133 Americans has celiac disease, an autoimmune digestive disease that damages the villi of the small intestine and interferes with the absorption of nutrients from food.As a result, people with celiac disease cannot tolerate gluten, a protein that is found in wheat, rye and barley products.
On September 13th, the United States recognizes Celiac Awareness Day as a result of a resolution passed by the Senate.The date has special meaning as it’s the birthday of Dr. Samuel Gee, the British pediatrician who offered the first full clinical picture of celiac disease in 1888 and also theorized that a special diet may help.Thanks to his research as well as ensuing medical advances, it is now possible to be tested for celiac disease antibodies and undergo further diagnostics, including a genetic test and/or biopsy. There are also numerous products, recipes and resources to support those on a gluten-free diet.
The problem, however, is that many people go undiagnosed.According to the National Foundation for Celiac Awareness (NFCA), which sponsors their own awareness month in May, 95% of celiac patients are undiagnosed or misdiagnosed.That means that up to three million Americans are suffering from the symptoms of celiac disease – which can include bloating, abdominal pain, diarrhea, nausea, migraines, rashes and joint pain – without knowing why.See this helpful checklist for a full list of symptoms as well as other conditions commonly linked with the disease.For example, a recent study found that celiac disease prevalence was 5-10 times higher in those with multiple sclerosis.
Think you or a family member might have celiac disease?Wish you could discuss it with someone who can relate?You can! Here at PatientsLikeMe, 115 members report celiac disease.Explore their profiles and get to know a patient with celiac disease.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.
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