Today is Rare Disease Day 2017, and to raise awareness Kimberly (firefly84), a member of the 2016-2017 Team of Advisors, recently shared some of her experiences living with autonomic neuropathy, a rare disease: “Perhaps you’ve heard the saying ‘when you hear hoof beats, think of horses not zebras,’ but I am the zebra in that herd of horses.”
Kimberly touches on the impact of living with a rare disease, and also what she had to go through to get a diagnosis for her condition. Watch her video to hear what she has to say…
“We have a small subset of people on PatientsLikeMe who have found us and who are gaining some expertise at being what might be called citizen scientists,” says Sally. “But I think the important piece is that there are so many more people out there that we have to reach and help understand that there is access to so much more information than you are currently getting. And social media is one way of doing that.”
Tune in below for Sally’s full comments and to hear what the other four panelists had to say about the growing use of social media in science.
Last week, health leaders from around the world gathered in the UK for the Nuffield Trust Health Policy Summit 2013, a two-day event focused on evidenced-based research and innovative solutions to the challenges facing the National Health Service (NHS). One of the invited speakers was PatientsLikeMe Co-Founder and Chairman Jamie Heywood, who discussed the drug development process as well how patients can drive value in healthcare. Tune in to hear Jamie’s well-received presentation below, which was titled “Creating a healthcare revolution.”
“That’s why we built PatientsLikeMe, to lower the cost of discovering new treatments and to measure and understand disease. Together, this community can help reduce the time to determine what works.” –Jamie Heywood
What happens when a patient finds another patient like them – for example, someone the same age with the same disease taking the same treatments? Problems get solved, says PatientsLikeMe Co-Founder and Chairman Jamie Heywood.
Click on the box below to hear more of Jamie’s thoughts in his interview with Boston.com, the online home of the Boston Globe, as part of an ongoing series called “The Innovators.” From the front door of our offices in Cambridge’s Kendall Square to the engineering team’s color-coded whiteboard, take Jamie’s insider tour of PatientsLikeMe headquarters and learn more about our mission of transforming healthcare.
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!
“I got this call from my brother Stephen, and he said the news doesn’t look good.At that point, he’d been through enough processes to know what that meant – he had ALS.So I began this journey with my brother and my family…. We were thinking there had to be a way to make this about the patient.But it started like everyone else. You get that phone call, and your life changes.” – Jamie Heywood, Co-Founder
Tune in below to hear where it all started and why, five years later, we’re committed to continuing the journey we’re all on – as a company, as patients and as family members of those affected by disease.
This year, we’ve finally found a few moments to get the team together and share our story as a company – and capture it all on video. Below are some cool pictures of our video crew and PatientsLikeMe team setting up for a recent video shoot. We hope to have the final video up soon, so stay tuned. Happy Wednesday!
PatientsLikeMe wants to wish all of our community members, Facebook fans, Twitter followers, blog readers and general company enthusiasts a very happy holiday season. Here’s a video from our leadership team to put a smile on your face.
In support of this campaign, PatientsLikeMe recently invited members of our HIV community to tell us in a few sentences about their experience and/or thoughts about HIV testing. Here’s what they had to say:
“I think it is probably the single most important thing a person can do for him/herself. The test will show if a person is infected, important knowledge no matter how it turns out.”
“Getting tested for HIV is so important. The knowledge of knowing can make a difference as to how you will live your journey in life.”
“Being tested for me caused me to change my outlook on sex, changed my life in such a way that gives me a opportunity to speak on the importance of being tested , and to share information about treatment, and that there is a life after testing takes place. If we ever what to see an end to this very serious problem across the world we must continue to speak and encourage testing in all walks of life. Moot for me I think not, important to get the word out yes,yes, yes. Experience is the best teacher.”
“I agree that experience is our best teacher. If you haven’t experienced things how could you give advice?”
“Knowledge is power, knowing your HIV status truly allows you to start living a healthier life, whether you’re are positive or negative.”
Want to know more about how to spread the word on HIV testing? Check out the latest promotions at AIDS.gov and, as always, feel free to share your own experiences there and with PatientsLikeMe.
Recently, PatientsLikeMe opened a community for people affected by HIV, our first outside the area of neurological diseases. Since then, we’ve gained some 700 patients in the community, including a member who goes by the name of “BrightonBear.” His experiences are quite unique as he’s been living with HIV for more than 25 years and has seen first-hand many of the tremendous changes that have happened in that time. Through my conversations with him, I’ve had to revise a lot of my views about HIV.
A few years ago, I did my PhD on the psychological impact of Amyotrophic Lateral Sclerosis (ALS, or more commonly called Lou Gehrig’s disease); a mysterious and rapidly progressive condition with no effective treatment and little public recognition. In examining other disease areas, I would sometimes look over the fence to other conditions to get a glimpse of what the future could be like. My hope was that one day, with a lot of work, we could replicate in ALS the great medical success story that has been HIV. In just 25 years, survival time has gone from being very brief to being effectively normal. The mechanism of the virus is well-understood, and as long as people have access to treatment, the problem is solved. Right?Through talking to BrightonBear I’ve learned that things are rarely so simple! Whilst anti-retroviral drugs have undoubtedly been a great scientific discovery, they require an almost obsessive level of compliance to avoid the development of drug-resistant strains. The problem is: if a drug regime doesn’t fit with a person’s lifestyle (say he/she does shift-work for instance), it’s going to be very hard for that person to stay compliant. It’s also worth pointing out that many people with HIV never feel sick, except for the side effects of the medication. So, here you have people living with HIV who feel well, but are being told they have to be 100% compliant with meds that made them feel nauseated, fatigued, or even change their appearance. If they decide to take a break from their meds for a while, they may feel much better as they’re no longer experiencing the side effects, but they risk developing drug-resistant strains of the virus whilst they do so. This is a very tricky and counter-intuitive balance to maintain.What’s really interesting to me as a psychologist though are the psychological issues that affect people with HIV. A positive test could have a massive impact on past, current, and future relationships. It can cast a cloud over happy memories of past relationships, introduce issues of trust and intimacy in current relationships, and present a real challenge in forming new ones. When I was first researching HIV, I was surprised to come across special dating sites just for people with HIV; where people could find others who would not be as judgmental or prejudiced about what it’s like to live with the virus. Today, people are turning to social networking sites. AIDS.gov is also hosting a blog series about how people with HIV and AIDS are using online communities to connect with one another. PatientsLikeMe is profiled on the blog this week, along with interviews from some of our members.
The message that comes across to me most strongly, however, is that HIV is still here. Sometimes it feels like the media has decided that HIV is a story that’s been resolved; science found the cure, so roll the credits and let’s all go home. But, in my opinion, we need to shift our views and understand that whilst we’re no longer confronted by images of people dying from HIV, the people living with HIV still need our support. I’m very grateful to BrightonBear for sharing his experiences with us, and helping me and many others understand that the story of HIV is far from over….
Learning from each other can be addictive, and even fun at times. One of our more prolific (and outspoken and creative) MS members, Keeping On, decided to celebrate her 1000th post with a musical salute to some of the most humorous posts and posters in our MS community. So she got together with another witty member, sacleveand, to produce and star the video “We Have MS Together!”