PatientsLikeMe

PatientsLikeMe T-Shirts

As the holiday spirit finally came upon us we thought we should do something nice for our members. There are thousands of them (and many more every day), so it isn’t reasonable to thank every one (we may look like Santa Claus, but we’re not, sadly). So we decided to thank the “stars” of the community – our three star members- and send them a PatientsLikeMe package with a rare PatientsLikeMe T-shirt, and other goodies. Here are some of our members showing off their new shirts…. This is one of our longer-time MS members, jhcamero, who has recorded 12 years of treatment and symptom information on the site. You have to love the “Christmas Story” lamp and stocking in the background. This is Kakijade, who was diagnosed fairly recently, and has used the site to track her care since joining in August. Both of these members are frequent contributors to the site. Both are being treated with newer meds, and their sharing of their experience with these drugs is very helpful for other members. PatientsLikeMe is about patients sharing their experiences and outcomes with each other so they can all better manage their disease and make the best possible decisions. …

PatientsLikeMe T-Shirts Read More »

PatientsLikeMe Update: November 2007

It’s been six months since we launched our first newsletter, and a lot has happened at PatientsLikeMe in that time. With the holiday season now upon us, we thought we should give thanks for the amazing strides made in all our communities. There is power in numbers, as they say, and we are grateful to every new member for increasing our ability to effect change. ALS Community We are proud to announce that our flagship ALS community has grown by nearly 50% in the last six months to 1,450 patients. We’re even prouder that it now attracts the equivalent of 10% of all newly diagnosed ALS patients in the US. To share what researchers can learn from this model for openness, our own Paul Wicks, PhD, will present a lecture on social medicine at the upcoming 18th Annual Symposium on ALS/MND, which we are co-sponsoring. Please stop by the PatientsLikeMe booth if you’ll be there! MS and Parkinson’s Communities Launched in late spring, our MS and Parkinson’s communities have also experienced staggering, if not meteoric, growth. We are delighted to report that our MS community recently hit a major milestone when it surpassed the 2,000-member mark(!) while our Parkinson’s community …

PatientsLikeMe Update: November 2007 Read More »

PatientsLikeMe Parkinson’s Patient Spotlight: Lynette1400

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one patient each month to find out more about how he or she approaches life. This month we are pleased to feature Lynette1400, a two-star member. What are you thankful for? A loving husband and family, wonderful friends, having had an interesting and exciting life, Social Security, Medicare, and pensions! What do you have an abundance in your life? A) Love and laughter. B) Time to do all the things I want to do but didn’t have time for when I worked. Because of this, I am busier than ever. What is your favorite holiday memory? There have been so many. When my three children were little, we spent Christmas Day at my mother’s. After dinner, she played the piano and my Dad and the whole family, including my three brother’s families, stood around the piano and sang Christmas carols while the children played with their new toys. It was like the Christmases in our family when I was a child. After the kitchen was cleaned up, the families would all sit around card tables and play card games. The …

PatientsLikeMe Parkinson’s Patient Spotlight: Lynette1400 Read More »

PatientsLikeMe at Health 2.0 Conference

PatientsLikeMe attended the inaugural Health 2.0 conference in San Francisco. Congratulations to Matthew Holt and Indu Subaiya for putting on a great show. Ben Heywood participated in the Social Media panel along with other great health 2.0 companies, DailyStrength, OrganizedWisdom, Inspire, MedHelp, and Sophia’s Garden. The high quality of each company’s offering ensures that patients will continue to have many destinations to share their health situations, get support, and even answers. At the end of the social media panel, the 500 conference guests were asked which company they’d choose if they were an e-patient. PatientsLikeMe received 39% of the votes. While we appreciate this high praise from our peers, our mission is to positively effect patient outcomes through our site and to improve healthcare overall. We’re honored to be a part of this movement with other leading companies in the space.

PatientsLikeMe Parkinson’s Patient Spotlight: chethk

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one member each month to find out more about how he or she approaches life. This month we are pleased to feature chethk, a two-star member. Where do you find joy? I find joy by being with my family, friends, co-workers, and customers; participating in life’s daily adventures and challenges; and giving 110% effort with every task I undertake everyday. What person do you admire most? My wife Kate for being the mother of my two children and putting up with me. How have you evolved since your diagnosis? I have had Parkinson’s for 14 years. It started as a nuisance, it is now a disability. I don’t believe a person evolves when facing a progressive disease; rather, a person either resolves to fight it everyday or give in to the symptoms and wither away. I have made the choice to find a way to overcome the ever-changing symptoms of Parkinson’s everyday. What have you learned from PatientsLikeMe? I have learned there are others with PD who have the same emotions, fears, anger, and resolve to fight this disease until …

PatientsLikeMe Parkinson’s Patient Spotlight: chethk Read More »

PatientsLikeMe MS Patient Spotlight: jtjackson

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one member each month to find out more about how he or she approaches life. This month we are pleased to feature jtjackson, a two-star member. What is your favorite time of the day? My favorite time of day is the morning, about a half hour after being up (between 6:30 and 7:30 a.m.), having my first cup coffee and thinking about what I can do today. I always have so much energy at this time and feel like I can conquer the world. Usually, reality sets in about 11 a.m. that I really do have MS and I need to slow down and rest (due to fatigue) so I am able to function enough to do the easy stuff. What makes you laugh? My two daughters (ages 27 and 17) really make me laugh (belly laugh) when they get to talking about themselves, their lives, people they’ve met – they literally do impressions of all kinds of people, from the abled to the disabled (they call them and me the “special” people), and watching them do their thing really …

PatientsLikeMe MS Patient Spotlight: jtjackson Read More »

PatientsLikeMe ALS Patient Spotlight: swhite.geo

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview a PALS each month to find out more about how he or she approaches life. This month we are pleased to feature swhite.geo, a two-star member. What are your interests and hobbies? Since my diagnosis, I enjoy helping others newly diagnosed and getting them on the right track. Then there’s the technological side; I’m always scouring the net for the next gizmo to help me overcome the challenge of life with ALS and keeping that glass half full. Being from Fayetteville, North Carolina, it’s hard not to mention the military, ACC basketball and summer trips to the beach, the mountains and Carowinds. But ALS certainly puts its own twist into all aspects of what we previously called life. For instance, my love for getting out and hitting that little white golf ball around has transformed into just being able to watch Tiger win another tournament. Other interests have been gardening, racquetball, tennis, beach volleyball, tinkering with the cars and going to any live sports event or concert. I’m also taking full advantage of the free movie admittance at the local …

PatientsLikeMe ALS Patient Spotlight: swhite.geo Read More »

Business 2.0 and CNN Money Recognize PatientsLikeMe as one of its “Next Disruptors: 15 Companies That Will Change The World”

PatientsLikeMe, the leading treatment and outcome sharing website for people with life-changing conditions, has been recognized by Business 2.0 and CNN Money.com as one of their 2007 “Next Disruptors: 15 Companies That Will Change The World“. “We are honored to receive this recognition. However, we know we still have much to do in order to achieve our mission of helping patients learn from shared real-world outcomes so we can all contribute to finding the best treatment options,” explains co-founder and CEO, Benjamin Heywood. PatientsLikeMe has taken an extraordinary position regarding patient data believing that openness and sharing, rather than strict privacy, is the best way for people to take control of their health care, improve outcomes, and accelerate research. The company has its Openness Philosophy posted on its website for anyone to view. PatientsLikeMe also shares aggregated data from its members in order to share data with the world, recently announcing their data repository in ALS, Multiple Sclerosis and Parkinson’s.

PatientsLikeMe Unleashes Real-World Treatment and Symptom Information to the Public for ALS and Multiple Sclerosis

PatientsLikeMe, the leading treatment and outcome sharing community for people with life-changing conditions, has released the most comprehensive real-world treatment and symptom dataset on ALS (Lou Gehrig’s Disease) and Multiple Sclerosis (MS). Previously, similar real-world information would have had to be mined and aggregated from proprietary sources such as hospital systems or insurance companies. Now, anyone can go to PatientsLikeMe.com and search for a particular treatment or symptom to find out the experience of over 2,300 patients. This unprecedented database includes medication dosage ranges, lengths of time on a treatment, reasons for discontinuation, symptom severity, and other key experience measures on over 1,300 treatments and 300 symptoms. Learn more….

PatientsLikeMe Parkinson’s Patient Spotlight: iowa

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one member each month to find out more about how he or she approaches life. This month we are pleased to feature iowa, a two-star member. What is your favorite time of day? Well, when I was first diagnosed 2 1/2 years ago, it was the first five minutes [of the day]; things went downhill in succeeding minutes due to my very low stamina. Nowadays my favorite time happens to be the first five minutes as well, but as a prelude to a wonderful day. That’s when my wonderful husband of 33 years brings me my morning cup of coffee in bed made to exact specifications. The coffee I mean. In these five minutes while I am regaining consciousness, I sip the sweet brew and reflect on how blessed I am and thank the Blesser. And then, being an incurable Type A, I make a list of some sort, which, in retrospect, is kind of silly since being an incurable Type E (easily-distracted), I rarely stick to it. My second favorite time of day is naptime, from which simple pleasure …

PatientsLikeMe Parkinson’s Patient Spotlight: iowa Read More »

Scroll to Top