43 posts in the category “Viral Series”

What’s your #MoreThan story? 11 patients – and counting – share theirs in a new video series

Posted June 19th, 2017 by

You’re more than your than your condition. You’re you – a father, a sister, a Nana, a spouse, a dog Mom, a sports fan, a professional singer, a veteran businessman, a traveler, a devoted friend, a furious yet hopeful fighter.

You play countless roles, and patient is just one of them.

There’s power in your #MoreThan stories – see for yourself. Eleven members of the PatientsLikeMe Team of Advisors have shared how they’re “#MoreThan” their conditions in a new ongoing video series. Watch this preview featuring just a few patients like you, and stay tuned for more stories coming soon.

 

You > your condition. And together, we are the answer. Join us in the fight to learn more, and keep sharing your stories.

Up for sharing your #MoreThan story on social media? Follow these 3 steps. Remember to use the tags #MoreThan and @PatientsLikeMe.

Share this post on Twitter and help spread the word.


Someone Like Me

Posted May 25th, 2012 by

We are pleased to present a guest post by PatientsLikeMe member Jasmine (Jazz1982), who was diagnosed with multiple sclerosis (MS) in her mid-twenties.  Don’t miss this beautiful essay about the commonalities between all patients who have lost functionality – regardless of how different their conditions might seem.

I recently met someone that happened to be just like me but not in the way that I expected. I’m currently doing my master’s thesis and was interviewing an occupational therapist who had had a stroke herself. Her name is Lena, she’s 55 years old and not only has she had one stroke, but four of them. You might think this had made her “disabled,” but as with a lot of people I meet that have a chronic illness, it has only enabled her even further and made her more determined. The interview was supposed to last a maximum of 30 minutes but lasted three hours. We just couldn’t stop talking.

MS Patient and Guest Author Jasmine (Jazz1982)

At this point I think I should introduce myself. My name is Jasmine, I’m 29 years old and I have multiple sclerosis (MS). To a layman’s ears, this would mean that on a random basis I lose one or more functionalities, and with medication, I might gain one or more functions back or maybe not. I’ve been one of the lucky ones, and I’ve gained almost all functionality back. A big thank you to my neurologist and rehabilitation team for helping me reach this point, and it’s a very happy point.

I’ve always been on the look out for someone just like me, give or take a few symptoms, only I was never been able to find that certain someone. That is, until Lena. I can’t say for sure how it all started but we started asking about each others’ symptoms, and I found out that she was on an MS drug for fatigue. This at first took me by surprise, an MS drug used for people who’ve had a stroke? What is this black magic that she speaks of? She went onto say that it has worked wonders for her and has made it possible for her to continue working. Then it hit me like a meteor:  we might have different labels that cause our symptoms, but what difference does it make if I’m fatigued or she is? It’s all listed under the category of fatigue, and if the medicine works for me, why not for her?

The more we shared, the more fascinating the other became. We first started off with similar symptoms and then diverged into our more “unique” ones and between the both of us there were a couple of doozies! I’ll give one of mine as an example – a time came where I could not recognize faces and explaining that to people was an impossible task as they could not relate to it so I simply avoided people altogether. She has never been through it, but the basic understanding of losing a functionality that is invisible to everyone else but you is a loss that once experienced makes it familiar. Basically, monkey suffers, monkey feels.

The repercussions of this had a larger than life effect on me and saved me many a session on the therapist’s couch. Amazingly, through the exchange of our uniquely individual symptoms that were incomprehensible to the rest of the world, and after years of feeling like an outsider, I suddenly felt “normal.” Imagine that, me normal!

I’ve always been the outsider, and now I suddenly felt like I wasn’t alone.

We have this idea that only someone that has the same disease knows what we’re going through, and I can not find that to be true anymore. I believe that we are on this Earth to connect with one another, despite age, color, race or disease. Being sick is merely another factor added to the matrix of connecting with others. We’re all people bringing our unique mix of genes, environment and strategies to the table of life. It sounds like it makes things more complicated, but to me, it has widened my net and simplified things. I don’t need to categorize and filter people and go through a checklist. All of that melts away into one question: “Does he/she get it?'” Simple, tried and tested on many a person, and I would highly recommend you try it as well.

So, the take-home message would be: talk to others. They don’t have to have the same disease to know what you’re going through, they just need the basics and the understanding. And I know that everyone out there can find someone out there that is just like you. Happy hunting!

These words are dedicated to Lena, thank you!

A big thanks to Jasmine for sharing her poignant revelation with all of us.  Stay tuned for more guest posts by our amazing patients!


One for All: The Opportunity to Make Patients’ Lives Better

Posted June 3rd, 2011 by

“Patients are giving us their data, and we need to honor that by doing something that advances their disease, their cause, their power in the world.” – Jamie Heywood

This week marks the fourth and final installment of our latest video series, which explores what the recent changes at PatientsLikeMe mean for you as well as the entire medical establishment. (Missed the first three interviews? Catch up on what PatientsLikeMe executives Ben Heywood, David S. Williams III and Paul Wicks had to say.)

In today’s video, PatientsLikeMe Co-Founder and Chairman Jamie Heywood talks about the next steps in realizing the goal of PatientsLikeMe: to help all patients determine how they can affect their health outcomes and live the longest, most productive lives possible. What will it take to do that? Tune in to hear his vision of how healthcare could evolve as quickly as technology, provided that the concept of shared data is fully embraced.

To keep up with all PatientsLikeMe videos, subscribe to our YouTube channel today.


One for All: How Medical Research Is Changing Right Before Our Eyes

Posted May 27th, 2011 by

“I think what’s really exciting is the scale we’re operating under.  My PhD was conducted with 80 patients.  Last week, I got survey responses from 4,000 patients in a week.  That is unparalleled power in the research world.” – Paul Wicks, PhD

This week marks the third installment of our latest video series, which explores what the recent changes at PatientsLikeMe mean for you as well as the entire medical establishment.  (Missed the first two installments?  Catch up on what PatientsLikeMe executives Ben Heywood and David S. Williams III had to say.)

In today’s video, PatientsLikeMe R&D Director Paul Wicks shares his thoughts on how the increased scale of PatientsLikeMe will impact not only the types of patient tools we develop moving forward but also the way medical research is conducted.  Tune in to hear some highlights of how PatientsLikeMe research efforts are already helping patients and researchers better understand what causes certain diseases.

Stay tuned for the fourth and final installment of our video series next week.  To keep up with all PatientsLikeMe videos, subscribe to our YouTube channel today.


One for All: Walking the Road Ahead with Both Patients and Industry

Posted May 19th, 2011 by

“You’re the patient who’s taking the medication. But industry can act almost like a friend who’s walking with you. And that relationship has never been the case in healthcare. Never.” – David S. Williams III

Last week, we kicked off our latest video series with an interview with President and Co-Founder Ben Heywood about the “long road” we’re all on together to change the way healthcare works for patients like you.

This week, Chief Marketing Officer and Head of Business Development David S. Williams III offers his perspective on how our industry partners can take part in this collaborative journey. Listen in to hear his thoughts on a new type of patient-industry relationship that is now possible thanks to social media.

Curious what other parties will share this “road” with us? Stay tuned for next week’s video interview with another member of the PatientsLikeMe executive team.


Canine Caretakers: How Service Dogs Can Help Many Types of Patients

Posted May 17th, 2011 by

Service Dog Mali

Now that PatientsLikeMe is open to any patient with any condition, we’ve noticed more patients with different conditions sharing similar lifestyle modifications. One example is the use of a service dog.

What are the benefits – both expected and unexpected – of a four-legged assistant?  We asked some of our members to talk about their service dogs’ best qualities.

The Uncanny Seizure Predictor

  • “[My seizure dog Mandy] has awakened me two times just as a seizure was about to start. I don’t know how she does it but she does. In fact, I had a seizure outside once (doesn’t happen often), and Mandy ran to a neighbor’s house and barked until they came to me.” Mandysmother (Epilepsy patient)

The Sensitive Tear Licker

  • “He is my balance dog. He knows when I am about to have a migraine or a seizure and he even knows when I am hurting. Isn’t that funny? He licks my tears when I am crying, and he knows when to stay away from me.”  Some1Special (Mental Health and Behavior patient)

The Good-Humored Mind Reader

  • “[My service dog Mali] was the best decision I ever made. With her I now have some of my independence again, and for a woman who used to climb mountains and water ski, going to the store again after years never going anywhere alone, this means the world to me. The fact that Mali has a sense of humor and seems to read my mind is only another blessing to go along with my newfound freedom.” Anahit (Fibromyalgia patient)

The Anti-Tripping Companion

  • “My neurologist thinks the service dog is preventing my gait from freezing! (When he heels, he constantly moves his head near my knee to check for a command.) I haven’t ended up on the ground or floor since I got him. He is great company! He is always willing to join me on my ‘5 miles/day,’ and since I got him, no one has mistaken my Parkinson’s for being intoxicated!”
    FriendlyTraveler (Parkinson’s disease patient)

Do you have an outstanding service dog too?  Share your experiences in the comments section and don’t forget to add “service dog” to your list of lifestyle modifications.

PatientsLikeMe member jdevita


It’s Fibromyalgia Awareness Day!

Posted May 12th, 2011 by

National Fibromyalgia and Chronic Pain Association

At the National Fibromyalgia & Chronic Pain Association, this year’s Fibromyalgia Awareness Day is themed CURE FM (Campaign for Understanding, Research & Education of Fibromyalgia), and many of our members are working to do just that.

Beginning as early as January, our fibromyalgia members have worked together to order t-shirts, send letters to TV shows and spread the word about fibromyalgia through their online social networks.

So what’s fibromyalgia really like? The best way to find out is from patients directly. Since we opened our doors to fibromyalgia patients in November 2008, we’ve had 13,826 fibromyalgia patients join our community and share their real-world experiences with this chronic pain disorder, which is characterized by pain or aching in the muscles as well as multiple points of tenderness.

Among other things, patients with fibromyalgia have reported that:

They also share practical tips for living with this debilitating condition in our forum every day. Some of the most popular topics in the fibromyalgia forum room include sleep issues, pain, research, coping and support.

Here are some recent forum comments about the disease’s effects:

  • “Sometimes I wonder who I am. It is like all the pain and problems define me. The pain controls my life.” –Fibromyalgia patient, age 50
  • “Being sick has permeated so much of my life that it comes up in almost every conversation I have.” –Fibromyalgia patient, age 33

To learn more about living with fibromyalgia, you can also explore individual patient profiles to see what people are saying about their symptoms, treatments and quality of life.  Get to know one of our fibromyalgia patients today.

PatientsLikeMe member emorgan


Join the Band: Raising Our Voices for Lupus Awareness

Posted May 10th, 2011 by
“I was diagnosed with lupus (SLE) at age 20 and had already lost about 60% of my kidney function. I had chemotherapy for nine months along with intense steroid therapy. I thankfully went into remission and have been since four months after my diagnosis. I still struggle with fatigue and kidney problems although I was transplanted in 2004. I will need another transplant most likely within the next year or two.”

Lupus patient, age 30

Lupus Foundation of America

May is Lupus Awareness Month, and today, May 10, is World Lupus Day.

Since PatientsLikeMe began welcoming all patients last month, we have quickly become home to more than 100 members with systemic lupus erythematosus (SLE), the most common form of this chronic autoimmune disorder that can affect any organ system in the body, including the heart, kidneys, lungs, joints and skin.

Here are some quick facts about SLE gleaned from our new members.

What is the gender breakdown?

What are the top treatments?

What are the major symptoms?

What can you do to increase awareness about lupus?   One very visible sign of support is wearing a wristband.  At the Lupus Foundation of America, the theme for this year’s awareness month is “Band Together for Lupus,” complete with accompanying purple wristbands.  You can also send an awareness e-card and download a flyer and logo for World Lupus Day, which you can then post on Facebook or other social media sites.

Finally, you can click here to sign the World Lupus Day pledge and watch a video featuring spokesperson Julian Lennon, the son of John Lennon.  He explains how the Beatles’ famous song “Lucy in the Sky” was written about his childhood friend Lucy, who passed away from lupus.

PatientsLikeMe member emorgan


One for All (Video): The Road Ahead at PatientsLikeMe

Posted May 9th, 2011 by

“We’re just getting started on a long road to really impact your individual disease and your quality of life…”

Each week this month, we’ll be posting a video interview with a member of the PatientsLikeMe executive team.  You’ll hear from Ben Heywood, Jamie Heywood, David S. Williams and Paul Wicks, Ph.D. about what the recent changes to PatientsLikeMe mean for patients, research, industry and the entire medical establishment.

Today, listen in to hear what Ben has to say about why we’re on this “road,” what has been improved with the recent upgrades and how sharing your own health journey moves us forward.  You can also see last week’s video teaser here.


PatientsLikeMe Refutes Published Clinical Trial

Posted April 25th, 2011 by

screen-shot-2011-04-25-at-41612-pmCongratulations to our R&D team here at PatientsLikeMe for its most recent paper published in Nature Biotechnology (“Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm”).  The full paper has been made available by Nature so you can read the results and access all of the supplemental data and figures.

Below are links to some of the media coverage about the paper, as well as a link to our own news release announcing the study results.

A special thank you to all of the ALS patients on our site for sharing the data that helped create this new insight and accelerate discovery like its never been done before.  Now that we’re open to all patients with any condition, we know your sharing will inspire the masses to share and learn together.

***

Marketwire (our news release)
PatientsLikeMe Social Network Refutes Published Clinical Trial

The Wall Street Journal
ALS Study Shows Social Media’s Value as Research Tool
(paper)
The Future of Social Network-Based Trials
(blog)

Boston Business Journal
PatientsLikeMe hits ALS study

FierceBiotech IT
PatientsLikeMe study challenges prior ALS claims

PatientsLikeMe member bheywood


PatientsLikeMe® Poll Reveals Patients Share Health Data Online Prefer to Keep Quiet With Doctors, Employers

Posted April 13th, 2011 by

screen-shot-2011-04-13-at-123447-pmPatients Unveil Top Reasons Not to Share Health Information

CAMBRIDGE, MA–(Marketwire – April 13, 2011) – According to a new PatientsLikeMe® Poll, almost one in three (29%) patients have withheld certain health information from their doctor. Of the 4,364 poll respondents, all of whom are members of PatientsLikeMe’s online health data-sharing community (www.patientslikeme.com), nearly half (47%) indicate that they have chosen not to share certain health information with an employer, while 14% have withheld information from insurance companies.

“Here’s a population of arguably the most open patients, who share detailed data about everything from their treatments to their sex lives on PatientsLikeMe, and yet some of these individuals feel uncomfortable sharing with other stakeholders in healthcare,” says Jamie Heywood, co-founder and chairman of PatientsLikeMe. “If we’re all going to make healthcare better, then it’s time we really understand what’s keeping patients from sharing information. That insight is crucial to improving the system.”

In their poll responses, patients also identified some of the reasons why they chose not to share their health information. Patients’ unwillingness to share certain information with doctors is driven by more emotional triggers. Almost half (44%) say they didn’t tell a doctor about something related to their health because they “didn’t want to be lectured/made to feel bad;” second to that was fear of embarrassment (36%). What aren’t they sharing with doctors? Respondents said symptoms (41%), lifestyle information such as “diet, alcohol, exercise, or smoking” (39%) and failure to take a prescribed medication (29%).

Alternatively, the majority of patients who withheld information from an employer cite more practical implications. Sixty six percent (66%) of patients indicate the top reason as being “none of their employer’s business,” but nearly half (49%) say they are afraid of losing their job and about one-third (35%) are afraid of not getting a promotion. Finally, the individuals who kept certain health information under wraps from their health insurance companies report they did so out of fear of losing coverage (39%), fear of not having a specific treatment or procedure covered (39%) or fear of premiums going up (25%).

The complete PatientsLikeMe® Poll results can be downloaded here.

NOTE TO EDITOR: All poll results must be sourced as originating from PatientsLikeMe®.

Poll Methodology
Between March 22nd and March 29th, PatientsLikeMe invited all members who had been active on the website within the past 90 days to participate in the PatientsLikeMe® Poll; 4,364 members completed the survey. Mean age of respondents was 49 years (SD 12, range 13-84).

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 Twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

PatientsLikeMe member lscanlon PatientsLikeMe member dwilliams


PatientsLikeMe Calls All Patients With Any Condition to Join

Posted April 11th, 2011 by

Today, PatientsLikeMe announces its expansion in the following news release. (You can click on the image on the right to see a visualization of real-time profile views on PatientsLikeMe.)

*****

CAMBRIDGE, MA–(Marketwire – April 11, 2011) – Today, PatientsLikeMe (www.patientslikeme.com) announces the expansion of its platform and invites patients with any condition to join. The five-year-old free online health data-sharing website was previously only available to patients with 22 chronic conditions (including ALS, Parkinson’s disease, HIV, depression, epilepsy, fibromyalgia, multiple sclerosis and organ transplants). In February, the company closed to new members and allowed its 100,000 members to test out its new design and upgraded functionalities, such as adding multiple conditions (or co-morbidities) to their health profiles and measuring their mental, social and physical well-being (or quality of life).

screen-shot-2011-04-11-at-84931-am“Every ten seconds on our site, a patient shares an answer to a survey question about their health. Approximately every minute, one of our members is viewing another’s profile to see these answers. It’s clear patients see the benefit of sharing deep health information,” says President and Co-founder Ben Heywood. “We’re excited to see how this openness and sharing will potentially change thousands more lives as we open the doors to every patient today.”

Since launching in 2006, members of the website have shared data on more than 9,700 treatments and 4,800 symptoms related to their chronic conditions. During that time, PatientsLikeMe also received requests from 23,000+ patients asking the company to “build a community” for more than 5,000 conditions, everything from the more commonly known conditions like rheumatoid arthritis, autism, diabetes and cancer to rare diseases like ankylosing spondylitis and Niemann-Pick disease.

Adds Heywood, “Patients can now share multiple conditions, symptoms, treatments and more through their profiles. With these changes, we’ve improved our ability to help people find more patients like them.'”


PatientsLikeMe member dwilliams PatientsLikeMe member lscanlon


One for All: The Road Ahead with PatientsLikeMeInMotion™

Posted March 23rd, 2011 by

PatientsLikeMeInMotion

This Spring, as you’re out at disease-related fundraiser events, take note of the people in those bright blue t-shirts walking, running or biking by your side. Those are patients like you!

Since its launch in 2009, more than 1,700 people (including patients, friends and family members) have taken part in the PatientsLikeMeInMotion™ program to raise money and awareness for various conditions. Here are some fun facts about PatientsLikeMeInMotion and a video of some of our members who have participated.

2009 Quick Facts

  • 2009 marked the debut of the PatientsLikeMeInMotion program.
  • Approximately 40 PatientsLikeMe members signed up teams to participate in PatientsLikeMeInMotion and led more than 700 people on PatientsLikeMe teams across the United States.
  • In its first year, the PatientsLikeMeInMotion program donated over $9,000 for charitable disease foundations such as the National MS Society (NMSS), Parkinson’s Alliance and the ALS Association (ALSA).
  • The largest member team in 2009 was formed for the annual Parkinson’s Unity Walk in New York. It’s here where we first met and interviewed some of our members (see our YouTube page to meet them).

2010 Quick Facts

  • A breakout year for the program, PatientsLikeMeInMotion doubled our number of sponsored teams from 38 in 2009 to 60 in 2010.
  • PatientsLikeMe members led teams of more than 1,000 people total wearing the recognizable, bright blue PatientsLikeMeInMotion t-shirts to events across 15 states.
  • Together, member-led teams raised more than $15,000 for their charitable disease foundations through PatientsLikeMeInMotion donations.
  • PatientsLikeMe teams were present at 20 NMSS events and 12 ALSA events, as well as fundraisers run by The National Alliance on Mental Illness (NAMI), The Epilepsy Foundation of America and the Parkinson’s Unity Walk.
  • PatientsLikeMe had the opportunity to sponsor Team Mid New England at the U.S. Transplant Games in Madison, WI (see highlights here.)
  • In 2010, we also launched our PatientsLikeMeInMotion Flickr page to host all of the photos our teams have submitted over the years. Check it out.

So, what will 2011 look like for PatientsLikeMeInMotion? That’s entirely up to you! Do you have an awareness event in your area you would like to be a part of? Sign your run/walk/bike team up for PatientsLikeMeInMotion and count on us to support you – both online and off!

PatientsLikeMe member lscanlon PatientsLikeMe member afleishman


One for All: Ways You Can Share, Find and Learn at PatientsLikeMe

Posted March 11th, 2011 by

When patients join our site, a common question we get is, “Now that I’ve signed up, what can I do here?” One answer is that you can chart the real-world course of your disease and compare it against other patients. But that sounds a little complex, doesn’t it?

If we break it down into simpler terms, we are really talking about you sharing your health outcomes with each other, finding other patients like you and learning from the information that you have all shared. That’s why “Share, Find and Learn” is part of our core message at PatientsLikeMe, as it best explains how you can help each other with the in’s and out’s of your condition.

Share, Find and Learn

To give you a better understanding of what we mean, we recently asked a few patients like you for examples of how you’ve used PatientsLikeMe to “Share, Find and Learn.”

PATIENT 1 (MS)

SHARE: “I’ve shared as much information [as possible] about the medications I’ve taken and still take and the CCSVI procedure that I recently went through. ”

FIND: “It’s helped tremendously when there are others that have undergone the same treatment or procedure in that we can share updates or milestones.”

LEARN: “We are all in the same boat. I’ve learned a lot about diets, vitamins and exercise, but most of all, I’ve learned to always keep the faith and never give up on hope.”

PATIENT 2 (MS, asthma)

SHARE:  “On the graph of the Multiple Sclerosis Rating Scale with time [which monitors the progression of MS], you have added reference percentiles to let folks know how they are doing relative to the rest of the population.”

FIND: “I just searched for females between 30 and 65 with three stars and could easily see who was doing better than average and who was doing worse than average.”

LEARN: “If someone is trying to decide about ‘medication versus no medication,’ they can fairly easily spend some time comparing how those who take medication are doing versus those who do not and make a decision for themselves.”

PATIENT 3 (fibromyalgia, Lyme disease, peripheral neuropathy, Babesiosis)

SHARE: “It is fascinating…how what one person learned about their condition, how to deal with it and what is normal, etc., can be communicated to everyone via this website.”

FIND: “I would like to do a search based on other members who also have chronic Lyme disease.” (Note: This is now possible, thanks to the recent upgrade. Use the search filters on the Patients page to find the nine members currently reporting Lyme disease.)

LEARN: “I actually have relieved one of my symptoms, in part due to PatientsLikeMe- and have found validation for this new treatment through PatientsLikeMe that I hadn’t seen otherwise. I’ve been a member since November, so that is amazing success in a short time.”

Thanks to all three members for sharing their thoughts and experiences. Why not see what you can “Share, Find and Learn” today?

PatientsLikeMe member kbrigham