May is amyotrophic lateral sclerosis (ALS) Awareness Month. As many out there know, PatientsLikeMe was inspired by the life experiences of Stephen Heywood, who was diagnosed with this serious neurological disease back in 1998. Stephen’s brothers (Ben and Jamie) made many attempts to slow the progression of his condition, but their trial-and-error approach just wasn’t working. They knew there had to be a better way, and in 2004 PatientsLikeMe was created.
Every year, about 5,600 people are diagnosed with ALS in the U.S. It can affect any race or ethnicity and there is currently no treatment or cure that will reverse or even stop its progression. By getting involved, you can help change that.
The ALS Association has put together a terrific calendar of events called “31 Ways in 31 Days.” For each day in the month they’ve created a simple way to get involved and help raise awareness.
Looking for more info on non-profits during ALS awareness month? There are a bunch of organizations dedicated to the cause. A fellow PatientsLikeMe community member put together a great list in his forum thread Comparison of ALS/MND Organizations.
If you’re living with ALS, find others just like you in our growing community of almost 6,000 ALS patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.
Did you know that four to six million people have Parkinson’s disease (PD) worldwide? And that 50,000-60,000 new cases of PD are diagnosed each year in the US? April is Parkinson’s Awareness Month and there are more ways than ever for you to “Join the Fight” against this neurodegenerative brain disorder.
Of all the psoriasis patients we’ve interviewed, Erica was hit by this highly stigmatized autoimmune condition the earliest – she developed visible symptoms at the tender age of 9. Now 21, she shares her decade-plus journey from being the girl that people avoided in school to an increasingly confident young woman who has finally started meeting others like her, people who are also living with the daily challenges of psoriasis. What difference has that made for her? And how has she started to take control of her treatment course as of late? Find out that and much more in this inspiring interview.
1. Tell us how you were treated by classmates and school nurses growing up.
The first few years were the hardest, trying to understand the disease and how it affected me. It was hard to explain to others, since they didn’t really want to listen. Most of my classmates avoided me because they were afraid they would catch it, no matter how many times I would explain it they never believed me. I was sent to the nurse a lot because I’d scratch my head or my arms till they bled. The nurses never wanted to deal with it so they sent me home. Now that I’m older and can explain it better, I don’t have as many problems. If someone stares at my skin, I simply tell them it’s psoriasis and it’s not contagious. But the hardest thing I had to go through was people avoiding physical contact with me.
2. How important is it to find the right dermatologist? You’ve said yours is like a second mother.
I’ve known Dr. Clifton since I was 13 years old, and I’m 21 now. It’s very important to have that great relationship with your doctor. They need to know every single little detail of your life when you have a serious disease such as psoriasis, as so many things can cause it to get worse or better and can react with the medications. You need to know that they will listen to you and take the time you need. You also need to trust them with your life. The last time I saw Dr. Clifton after three years, I had changed, however, and I didn’t agree with the treatment course she wanted to do. I respect her advice but I don’t agree with her [at this point], so therefore I’ve decided I want to find a different dermatologist.
3. What’s helped you develop the confidence and love of life you have now?
I still have days where I feel depressed but I’m lucky enough to be surrounded by amazing supportive people in my life. God is the main reason I overcame the depression. I pray a lot! I also read my Bible, listen to Christian music (Skillet is my favorite band!), talk to someone and change my way of thinking. When I feel sad or upset I’ll look up Skillet on the laptop and just play it as loud as I can and just breathe. I always feel better after that. I go to an amazing church that has some awesome people in it. I know I can call or text any of them any time and they will be there for me. If I’m focusing on the bad, I try to look at the bright side of things and that seems to help as well. But praying is by far the thing that makes me feel best and at peace.
Growing up with psoriasis, and having no one else around with it, was extremely hard. I had no one to connect with. But since being on the site, I’ve made some great connections and have made some lifelong friends. The strange thing is how much we have in common and how many of the same things we’ve been through. What’s awesome is being able to tell someone what’s going on with my skin and they really understand because they’ve been through the same thing. In the past nine months, I’ve also met a lot of people in person with psoriasis and I’m always telling them about this site!
One in three adult Americans is estimated to have prediabetes – marked by high blood sugar levels – so don’t think it couldn’t happen to you. Fortunately, lifestyle changes such as weight loss and increased physical activity can delay the onset of type 2 diabetes, or even prevent it altogether.
Not only will you find out your risk level by taking this free and fast test, but you’ll help raise money to fight the growing diabetes epidemic (26 million children and adults in the US). Boar’s Head is donating $5 to the ADA for every person who takes the test between March 26th and April 9th – up to $50,000.
So take a moment and answer a few simple questions about your weight, age, family history and other potential risk factors. You’ll be helping yourself potentially avoid a serious disease, and you’ll be helping others no matter what. Take the test now.
“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.
Did you know that 1.7 million Americans sustain a traumatic brain injury each year? Or that the term includes any type of blow, bump or jolt to the head or penetrating head injury that disrupts normal brain function?
March is Brain Injury Awareness Month, a time for reinforcing the seriousness of head injuries, given that traumatic brain injuries are a contributing factor in a third of all injury-related deaths in the US. In addition, 3.1 million individuals are living with life-long disability as a result of a traumatic brain injury. Some common causes of these injuries are falls, car accidents, workplace accidents and assaults, but the effects can vary greatly from person to person. No two brain injuries are alike.
Are you living with a traumatic brain injury? Share your symptom and treatment histories with the 500+ members of PatientsLikeMe’s traumatic brain injury community and discuss your experiences in our Injuries and Traumas Forum. In addition, consider raising awareness in your area by getting involved with the Brain Injury Global Picnic, which takes place September 21, 2013. The goal is to organize 1,000 picnics around the world – thus setting the Guinness World Record for the most people picnicking in a 24-hour period – to promote awareness, education and change.
As a speaker at the workshop, Sally Okun, PatientsLikeMe’s Health Data Integrity & Patient Safety Director, invited me to speak for the patients of PatientsLikeMe as her co-presenter.
I had everything worked out to exactly what I wanted to say and right in front of me so I wouldn’t forget, but I couldn’t tell you what I even said. LOL. I know I didn’t want to look down and read, it needed to come from the heart and what I could remember. I thought I’d freeze and not be able to say a word, but after introducing myself I felt really comfortable with looking at the audience and speaking. Even with Liz Morgan, Head of Community at PatientsLikeMe, taking pictures, I was able to talk.
There was a large, diverse group of people attending and presenting. I wish I could do a better job of portraying the event, but it was large. Healthcare, patients and families were the subjects of the workshop. Lots of ideas were put forth on everything from how to improve the healthcare system to how to make patient records available to the patients electronically, such as recording doctor visits and putting them on a CD for the patient to keep and play for other family or friends who were not at the appointment.
Recording doctor visits is something I’d love to see. How many times have you left the doctor’s office and each person present remembers the visit differently? Or you can’t remember if you discussed a particular test or not? I did push the importance of the patient keeping hard copies of ALL tests, doctors’ notes, you name it, get a copy. I would love to see the ability of viewing my records electronically so I could view my results quicker, make notes to ask the doctor, etc. There was also talk of submitting questions for the doctor in advance for the doctor to review and be more prepared for the visit. Also, the staff would print a copy of your submitted questions so you would have it in hand and remember what to talk about.
There was way too much to compress into a brief review of the event, but there were a lot of really good, logical ideas presented. How many of the things discussed will eventually become a reality? Only time will tell. Privacy will be a major roadblock I fear. Everyone that I heard talk did agree that collecting data from the patients themselves was important, and PatientsLikeMe was mentioned more than once by others there.
Sally and Liz were a delight to meet and spend time with, as we are all passionate about PatientsLikeMe and how it has helped many of us through the years. Really had a great time, and I wish I could have spent more time with Sally and Liz, but the time we did spend talking was productive and invaluable.
Launch at European NHS Healthcare Innovation Expo Comes as PatientsLikeMe Chairman Calls for Revolution in Disease Measurement
CAMBRIDGE, Mass. — — The U.S.-based patient network and real-time research platform PatientsLikeMe unveils its global clinical trials tool today at Europe’s Healthcare Innovation Expo 2013, hosted by the National Health Service (NHS). The free tool, unveiled today by Research Director Paul Wicks Ph.D., draws on open data to match patients from around the globe with clinical trials based on their condition and location. The U.S. prototype was launched last year and has already helped thousands of patients find suitable clinical trials. The tool is available at http://www.patientslikeme.com/clinical_trials.
Last week, PatientsLikeMe Co-founder and Chairman Jamie Heywood spoke about innovative solutions to healthcare at the 2013 Nuffield Trust Health Policy Summit in London. Nuffield Trust is an independent source of evidence-based research and policy analysis for improving health care in the UK. Heywood returns to London tomorrow to speak on the Expo’s Masterclass Stage about the importance of measurement in building a learning health system.
In his Nuffield speech, Heywood called for a “revolution in measurement,” or what he calls “measurement-based medicine.” He adds, “We should measure the severity of each condition and its impact on the patient. The measurement should support the patient in life choices, clinicians in care choices and researchers in learning what’s effective. And every patient should be measured as part of the care process to the degree appropriate for the severity of their condition, so that their experience can be used to guide the next patient.”
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.”
Last week I had the pleasure of attending the Institute of Medicine’s (IOM) Partnering with Patients workshop, where PatientsLikeMe’s Health Data Integrity & Patient Safety Director Sally Okun, RN, MMHS, and PatientsLikeMe member Laura Phillips, who has multiple sclerosis (MS), shared the stage as co-presenters. It was a novel approach to incorporate a patient co-presenter into our presentation, and Sally reported that it made the experience quite special for her.
The day-and-a-half-long meeting brought together clinicians, researchers, policy makers, advocates, patients and caregivers—people who all care about creating better value and improving the quality of healthcare in the US. In the opening remarks by IOM Chairman Michael McGinnis, whose arm was in a sling, we were reminded that everyone is a patient at some point, but most don’t always have that mindset.
The meeting covered many topics, including the problems with healthcare that are complicated and hard to change. Coming from the PatientsLikeMe community team, the topic that struck me most was empowering patients to meaningfully participate in the decisions that affect them, such as which treatment to take or which doctor to see. There are many barriers to finding the answers, and we have a long way to go in making the answers more accessible, but I was happy to reflect on how our growing community of 180,000+ patients is already becoming more involved in their care by sharing their symptom and treatment data with each other.
Here were two other key takeaways from the workshop, as well as a look at how PatientsLikeMe is addressing each issue:
1. Patients need more information – and better information.
We heard that patients don’t have enough information, and they don’t know how to use the information they do have. Research articles are convoluted, access is limited, options aren’t presented; and as we heard from rheumatoid arthritis (RA) patient Kelly Young, who writes the blog RA Warrior, textbook definitions may not apply to everyone.
In contrast, our PatientsLikeMe community is sharing what’s normal to them, helping others interpret and digest research and creating a real-world database of what is actually going on with their health conditions. That way, members can learn the different treatment options and disease courses, discover the questions they haven’t yet thought about, and decide what’s right for them.
2. The entire doctor/patient culture could use a tune-up.
There was a massive call for a “culture change” in many areas of healthcare, including the way clinicians and patients interact. Jeff Belkora from the University of Califormia, San Francisco, and his team of pre-medical interns shared how having an advocate can make a big difference in doctors’ appointments. For example, an advocate can help you define your questions, actually ask them in the office and be an active participant in making decisions about your care.
While some argue the culture change needs to come from both patients and clinicians, PatientsLikeMe members are already taking huge leaps in demanding to be heard. Members are sharing that it’s okay to fire your doctor, learn from others the right questions to be asking and arrive at doctors’ appointments with your own data in hand, including PatientsLikeMe’s handy Doctor Visit Sheet.
Overall, it was great to see so many people focused on making healthcare better, and that all of these various groups are looking to other consumer models for best practices. I truly felt that the workshop attendees were dedicated to listening—and finding new ways to listen—to families and patients in the name of better care.
What did PatientsLikeMe member Laura Phillips think of the IOM workshop? Check out her take.
It’s been a busy couple of weeks at PatientsLikeMe. Here are a few media highlights showcasing all the exciting things that are going on, from new partnerships with Aetna and Boehringer to the major grant we were awarded by the Robert Wood Johnson Foundation to TED2013 Fellow Paul Wicks’ presentation at TED2013 last week.
So what do we know? IPF is a degenerative condition with no known cause that gradually scars a person’s lung tissue. As more and more tissue scars, the lungs slowly lose their ability to transfer oxygen to vital organs. This can lead to shortness of breath and dry coughing. As the condition progresses, everyday activities become exhausting – just climbing a flight of stairs can be a challenge. It usually affects people between the ages of 50 and 70 years old. More than 100,000 people in the US are diagnosed every year and nearly 40,000 will pass away. The only known cure is a lung transplant.
If you’re living with IPF, find others just like you in our growing community of almost 200 IPF patients. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile and in the IPF forum. If you haven’t read about our collaboration with Boehringer Ingelheim to create this customized IPF experience on PatientsLikeMe, check it out here.
Today, February 28th, is Rare Disease Day, a worldwide event showing solidarity with rare disease patients and their families around the globe. The theme for this year is “Raise and Join Your Hands,” and everyone is being asked to participate, whether you’re an individual, an office with 10 people or a public gathering with 1,000 people.
Here at PatientsLikeMe, we are taking part by raising our hands and sharing our group photo in solidarity with the campaign as well as all of our members living with rare diseases, which affect 1 in 10 people worldwide. You are encouraged to submit your own photo here.
Many of our members with psoriasis, a chronic autoimmune condition that can produce red, scaly patches and other skin symptoms, report experiencing various forms of bullying while growing up. One relays the story of a teacher who repeatedly sent her to the nurse’s office, assuming that she had a contagious condition. Another recalls receiving notes in her locker informing her that she was not welcome in gym class or study group. And yet another shares that her classmates spread sexual rumors that her psoriasis was really rug burn and voted her most likely to get pregnant in high school.
These are just a few heart-wrenching examples of the stigma, ignorance and misinformation that often surround psoriasis, which is not contagious. For these members, the bullying they encountered growing up often had a major psychological impact that included hurt feelings, self-consciousness, depression, anger, loneliness and dating difficulties. Some report that it ultimately made them stronger, however. Have you been mistreated as a result of your psoriasis? Share your stories with others who can truly relate in PatientsLikeMe’s growing psoriasis community, which now has over 3,400 members.
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.