It’s Parkinson’s Awareness Month. As we continue to spread the word about this condition, we wanted to tell you a little bit more about our PatientsLikeMe Parkinson’s community. Launched two years ago this month, the community has steadily grown to include more than 3,400 patients. Below are some interesting facts about the community, as well as an interview with one of our members (“PokieToo”) giving her real-world experience of living with condition.
WHAT’S IT LIKE LIVING WITH PARKINSON’S DISEASE (PD)?
Meet PokieToo. A long-time member of our PD community, she tells us how she continues to “look for the sunshine” while “taking 30 pills a day.” “Out there for the next person,” PokieToo gives us a glimpse of the real-world experiences of living with Parkinson’s disease.
Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Sinemet, Mirapex, Deep Brain Stimulation/DBS and Exercise), symptoms like tremors and depression, as well as other hot issues like SSDI (Social Security Disability Insurance), the annual Parkinson’s Unity Walk, stem cells, clinical trials and research.
“Adverse events” are severe side effects or events that occur as a result of using a medication, medical product or device. Understanding when these events occur helps the FDA better regulate the pharmaceutical and medical product industries to protect consumer safety and bring safer, more effective products to market.
We are excited about this pilot as it marks the first time ever that an online patient community has helped its members identify and report adverse events. We recently submitted our first batch of reports to the FDA’s MedWatch system.
Patients like you are becoming more and more influential in their treatment decisions. No longer are you simply consumers of pharmaceuticals and medical products, you are customers. In this emerging world, you have become better educated about your treatment options, the risk and benefits of different treatments, and your overall quality of health. Now you have the opportunity to tell the FDA if you’ve had an adverse event.
Sharing. It’s a concept we all learn at a very young age. Oftentimes reminisced as happening in the sandbox, we think back to our young selves giving up what we hold most dear (in this case, some cheap plastic toy) to allow someone else to benefit from it. It seems so simple and obvious, but how many toddlers do you know that immediately give into the concept…easily handing over that toy without a moment of hesitation or a slight tug back or possibly the more extreme screaming tantrum? Over time, what happens is that the more they share, the more they see it puts a smile on their friends’ face, or gives them something in common to “chat” about.
You don’t need to be clairvoyant to see where I’m going with this. Sharing is at the core of PatientsLikeMe, and it’s what makes our communities so special. More than 32,000 patients are online sharing something they hold dear — details about their health — so that others can see it, learn from it, and dialogue about it. It’s truly inspirational and something we believe is transforming healthcare as we know it.
But sharing doesn’t have to stop there. From a marketing perspective, one of the most widely used and successful viral tactics is the “Share This” button. You see it everywhere online – blogs, news articles, videos, and more. We just recently implemented it across our site, so patients can “Share This” treatment or symptom report, press releases, research findings, etc. It’s an easy way to pass that “toy” across the cyber-sandbox to others who might learn or benefit from it.
It’s nice every once in a while to think back to what we learned as kids and figure out a way to incorporate those values into our adult lives. Sharing is just one of those things.
So you weren’t the type to share your toys? Feel like you share too much? Comments are welcome below.
This month marks the 3-year anniversary of our flagship ALS community. While there have been so many exciting milestones we’ve reached in that time, we’re always looking at ways to bring new insight to this disease.
Today, we’re announcing the launch of our Genetics Search Engine for people with ALS. Imagine finding other patients just like you, down to the genetic level. Patients in our ALS community can now do that. (For patients who don’t see their genetic mutation right now, that’s alright. They can be the first with that genetic mutation to join our community and share information about the disease.)
What does sharing genetics mean for research? By capturing data on familial ALS patients’ known genetics (such as SOD1 A4V, SOD1 D90A, and VAPB P56S), we can learn more about the cause and effects of every kind of ALS and better our chances of advancing research and finding new treatments. Our goal in launching the Genetics Search Engine (and other upgrades like it) is to help patients find others just like them and enhance our understanding of the phenotype of each genetic mutation (i.e., different causes of ALS have faster or slower disease progression).
Did you know this April is both Parkinson’s Awareness Month and the 2-year anniversary of the PatientsLikeMe Parkinson’s community? We invite you to celebrate with us all month as we share real-world patient insights and experiences of living with this disease…and we ask you to share on!
The PatientsLikeMe Parkinson’s community has come a long way since it launched in April 2007 – topping more than 3,400 patient members in just 24 months. Our community members share so much about themselves on a daily basis – from details about how they manage their condition to their personal experiences and stories. Why share? Simply stated, to learn more about themselves while helping others better understand this condition. In the spirit of awareness and sharing, this month we’ll share with you some of what we’ve learned so far from these inspirational individuals and keep it real with some personal patient stories about living with PD.
Additionally, later this month, PatientsLikeMe is once again sponsoring the Parkinson’s Unity Walk (www.unitywalk.org), “the largest single-day fundraising event for the Parkinson’s community.” The event, which brings together thousands of people touched by Parkinson’s, takes place every spring in New York City’s Central Park. PatientsLikeMe members from all over the U.S. will once again be meeting in New York to walk together as a team. (Check out some of our onsite interviews with PatientsLikeMe members from the 2008 Unity Walk and keep an eye out for 2009 highlights).
Stay tuned for more from us as the month unfolds. Until then, what else is happening this year for PD Awareness Month? Share your events or PD news in the comments below!