12 posts from December, 2012

A Patient Poem for the Modern Age

Posted December 31st, 2012 by

Can you be friends with someone you’ve never met in person?

The members of our online health community – now 300, 000+ patients strong – think so.  In fact, many of them say they depend on other members for support and encouragement, and for the all-important reminder that they are not alone.

As evidence, here is a touching poem written by a newer PatientsLikeMe member.  Although he wishes to remain anonymous, he says that he wrote the poem to “uplift people who feel like no one understands them.”

Dedicated to Internet Friends

It’s strange to have a friend

that you have never hugged,

lightly touched their arm,

or looked into their eyes.

But you have touched their soul

felt their heart

been embraced by their warmth of being.

A friend unseen is not a friend untouched.

The eyes of the soul will gaze,

the heart will embrace

the image will stand tall

but only in a dream.

Want to connect with those who can truly relate?  No matter what health condition you have – from multiple sclerosis to fibromyalgia to Parkinson’s disease – find others like you at PatientsLikeMe.


Use It or Lose It?

Posted December 27th, 2012 by

You’ve all heard the phrase “use it or lose it” before.  But should it be applied to patients with chronic, debilitating illnesses?  That’s an ongoing debate in the PatientsLikeMe forums.  Take for example this discussion of cognitive difficulties in our Multiple Sclerosis Forum.

The Four Lobes of the Human Brain

On the one hand, there’s the argument that brain exercises such as word games can help you recover or improve cognitive skills.  For people who like the idea of challenging themselves to stay as sharp as possible, the phrase can be a motivating call-to-action.  Others, however, are bothered by the phrase as they feel it implies that cognitive decline is the patient’s fault.  Or that it makes it seem like “using” can stop the “losing,” which could be misleading in many cases.

Overall, this controversy is one that can help can help friends, family and the public at large be more sensitive to those with cognitive challenges due to their health condition.  “Brain fog” is a common symptom of numerous chronic diseases, including multiple sclerosis and fibromyalgia.  While there’s a natural instinct to encourage loved ones, it’s important to remember that every patient’s journey is an individual one, and no amount of “using it” can necessarily prevent cognitive symptoms.

What everyone seems to agree on, however, it that brain games and memory exercises certainly can’t hurt.  What do you think?  Join the discussion in our forum or share your thoughts in the comments section.


Spirited Support at the Jingle Bell Run/Walk for Arthritis

Posted December 24th, 2012 by

We’ve sponsored hundreds of fundraising teams through our PatientsLikeMeInMotion program, but we’re pretty sure this team wins the blue ribbon for most festive.

Yes, This Is the First Time We've Seen a PatientsLikeMe T-shirt Worn with a Red and Green Tutu

Please meet PatientsLikeMe member Kennqueen’s very colorful team, who donned their best tutus and striped socks for the Jingle Bell Run/Walk for Arthritis in Richland, Washington, on November 17, 2012.  Kennqueen has been living with rheumatoid arthritis (RA) for more than a decade, and her supportive family and friends came out to raise spirits and jingle in her honor while raising money for the Arthritis Foundation.

Festive from All Sides!

This particular Jingle Bell Run/Walk in Richland, Washington, part of the Tri-Cities area, raised more than $20,000 for arthritis research, while all Jingle Bell events across the country have raised more than seven million dollars to date!  How’s that for some holiday cheer?

Life Is Better with Teammates!

Inspired to get into the fundraising spirit in 2013?  Learn how the PatientsLikeMeInMotion program can help with t-shirts and a monetary donation for your team.

Until then, Happy Holidays from PatientsLikeMe!


Join the Robert Wood Johnson Foundation’s $200,000 Developer Challenge!

Posted December 21st, 2012 by

Can a game app lead to better health?  The Robert Wood Johnson Foundation thinks so.  They’ve announced a competition challenging developers to create game apps that “generate useful health care data to improve health and health care.”

Learn More About the Developer Challenge

The competition will be conducted in two phases. Phase One is an “open ideation phase” where interested developer teams can submit app concepts. From there, the top five teams will be awarded $5,000 to build upon their initial proposals and create working game apps.

What’s at stake?  The developer of the winning game app receives $100,000, while second and third place winners earn $50,000 and $25,000, respectively.  Winners will be announced in September 2013, with the first place winner honored at the Health 2.0 7th Annual Fall Conference.

The deadline for submission is February 22, 2013.  Learn more and register for the challenge here.


Out of the Office: PatientsLikeMe Visits ALS Pioneer Steve Saling

Posted December 19th, 2012 by

Earlier this month, PatientsLikeMe Co-Founder and President Ben Heywood, along with marketing intern Jenna Tobey, went to visit the Steve Saling ALS Residence, which is part of the Chelsea Jewish Foundation’s Leonard Florence Center for Living in Chelsea, MA. The foundation has been providing high-quality care for over 90 years and includes the nation’s only specialized ALS residence.

The Steve Saling ALS Residence Is Located Within the Leonard Florence Center for Living in Chelsea, MA

When Steve Saling was diagnosed with ALS, a rapidly progressive neurodegenerative disease, in 2006, he immediately began to “secure a way to provide for care” as his condition advanced. His expertise as an architect, his keen interest in technology and his diagnosis all proved vital as he worked with Barry Berman, CEO of the Chelsea Jewish Foundation, to create the first-ever, fully automated ALS residence. This state-of-the-art residence soon became a reality and opened its doors in August 2010. Despite this tremendous accomplishment, Steve isn’t done yet. He has also created the ALS Residence Initiative in an “effort to duplicate the project nationwide.” The next facility to open will be in New Orleans.

PatientsLikeMe President and Co-Founder Ben Heywood Getting a Tour from Longtime PatientsLikeMe Member and ALS Activist Steve Saling

Steve greeted Ben and Jenna at the door and was excited to get the tour started. Unable to speak on his own, Steve communicates through a sight-based technology that can translate eye movements on a computer screen into audible speech. As he showed Ben and Jenna the residence, Steve demonstrated the independence that advanced technology and the center provide him by opening doors, turning on lights, operating elevators and changing TV channels. The foundation also encourages this independence by getting their residents out and about.  Steve described some of their recent excursions, like going to the movies, downhill skiing at Nashoba and traveling to Disney World.

The Dining Area of the Steve Saling ALS Residence

Steve became a PatientsLikeMe member seven years ago following his diagnosis. Since then, he has been a model community member, regularly updating his symptom reports and frequently chiming in on the ALS forum. In his PatientsLikeMe profile summary, Steve says, “I accept my new challenges and take a great deal of satisfaction in adapting to my losses.” The PatientsLikeMe ALS community is nearing 6,000 members, with patients learning from each other’s shared experiences every day.  Join the conversation anytime; they’d love to hear from you.

To learn more, check out the video below, in which Steve discusses “the dire need for residential living options for the chronically disabled.”

ALS & MS Residences at the Leonard Florence Center for Living from Steve Saling on Vimeo.


My War with Psoriasis: An Interview with British Blogger Simon

Posted December 17th, 2012 by

Welcome to the latest installment of our “Spotlighted Blogger” series.  Earlier this year, we focused on psoriasis bloggers, including Lissa, Alisha B., Jessica and Joni, and today we’re pleased to add a male perspective to the mix.  PatientsLikeMe member Simon’s witty blog, entitled My Skin and I, discusses his decade-long battle with psoriasis, a chronic autoimmune condition that can cause itchingrashes and plaques.  What has he learned along the way?  Find out that and more in our interview.

Psoriasis Blogger Simon of "My Skin and I" Relaxing and Enjoying the Holidays

1.     Why did you start blogging about psoriasis, and what’s the reaction been?

I started blogging as a way to vent my feelings. I don’t really talk about my feelings, even to my family, and found it very hard to explain what was going on in my head and in my life.

When I spoke to people about psoriasis, I kept a lot back and, to write it, even if I hadn’t published it, was a release. I decided to make it public partly as I needed my family to understand what I had been going through and also to help raise awareness.

The reaction has been positive.  I have been told I made a few people cry and even had other friends suddenly announce they also have the condition. This showed me that I wasn’t alone and that there are many people that feel the same way and hide their emotions. I am quite pleased that I haven’t had much in the way of sympathy as that’s not why I started the blog.  The worst thing is people saying, “you poor thing.”

2.     You write about your “war with psoriasis.” Are you winning these days?

Ask me this question on different days and I might answer it differently each time. I would say generally yes, although I have lost a few skirmishes lately. The last couple of months have been extremely stressful due to personal and work issues, which hasn’t helped, and psoriasis clings on to moments like that. Also, with the cold weather in the UK at the moment, especially with the sudden freezing weather, my skin is quite sore and dry despite using my creams.

My skin is still at a manageable state, though, and even though it has got a little worse over the last week, it’s nothing I can’t handle. I just have the slight wobble, then think of Christmas coming, and there has been plenty going on lately to keep my mind occupied. The dark space that psoriasis occupies in my head is quite small at the moment.

3.     You recently joined PatientsLikeMe. What’s your impression thus far?

My first impression is good. I haven’t been that active on the site but then I haven’t done much on the blog either recently, or on my food blog that I also write, purely because I’ve been so busy. The people I have come into contact with through the site have all been positive and friendly, which is great. There is a time when the purely psoriasis groups/sites get a bit depressive, and I find myself backing away.

What’s Simon’s other big passion beyond psoriasis awareness?  Food, as this photo of him preparing Coq D’Argent shows. Does he alter what he eats based on his psoriasis?  Click to read the answer.

Psoriasis does seem to bring a lot of anger with it, and I quite understand that.  I just wish my fellow sufferers were a bit friendlier to each other now and then. And there are some who are brilliant; in fact, you have interviewed a few already. It is quite sobering to read what others go through, and this helps me get some perspective on my own condition.

4.     What advice would you give someone who’s newly diagnosed with psoriasis?

I would say make sure you see your doctor (GP here in the UK) and ask for a referral if you think your skin is bad enough. Find one of the many supports sites, like this one, which can measure your severity. But if the doctor can’t seem to help you, ask to be referred no matter how bad your skin is. Also persevere with the medication, as your skin is very unique to you and, just because one treatment works for one person, doesn’t mean it will work for you. Give them time to work and, if there’s no response, try something else.

The other thing is to talk.  It doesn’t have to be to your family or anyone close. The most important person is your doctor – don’t just show them your skin, tell them exactly how it makes you feel. If you can’t tell anyone, then write it down. There are many support networks out there with people who have the same condition and who will understand what you are going through. One last thing:  do not give up the fight.

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Want to hear how other psoriasis patients are dealing with dry air, cooler temps and other seasonal changes?  Check out our recent Patient Voice report on coping with psoriasis in the fall.  Also, find all of our blog coverage of psoriasis here.


Today’s Photo: Enthusiasm and Hope at Walk MS

Posted December 14th, 2012 by

“There is still no cure, but at least now, thanks to these fundraising events, there are advancements in patient care, and there is hope.”
Multiple sclerosis (MS) patient Judy

It may be winter now, but plans for next year’s disease-related fundraising events are underway.  The question is:  will you be taking part?

For inspiration, see Judy and Jim below in their bright blue PatientsLikeMeMe t-shirts before the start of Walk MS in Cranford, NJ, on April 15, 2012.  “When I was first diagnosed over 20 years ago, there were no therapies for MS patients and knowledge was limited,” says Judy.  “We’re grateful to PatientsLikeMe for their continued support for events that raise awareness and funds for MS research.”  She adds that the Cranford Walk MS event had “a large and enthusiastic turnout.”

Judy and Jim at the 2012 Walk MS Event in Cranford, NJ

Congrats to Judy and all of our PatientsLikeMeInMotion-sponsored teams for your efforts. For more PatientsLikeMeInMotion team photos, check out our growing Flickr collection. Thinking about organizing a team for next spring? Learn how the PatientsLikeMeInMotion program can help with t-shirts and a monetary donation.


Innovating Healthcare Through Shared Patient Knowledge

Posted December 12th, 2012 by

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.

The Innovators: Patients Like Me, Meet James Heywood, Innovator, Chairman and Co-Founder from REEL Entrepreneurs, Inc on Vimeo.

For other recent media highlights, visit our Press page.


Not Recognizing the “New Me”

Posted December 10th, 2012 by

Are You Resistant to the Idea of a Wheelchair?

For many newly diagnosed patients, accepting help can be as difficult as accepting the diagnosis itself.  According to some of the members of our Parkinson’s disease community, here are a few signs that you may be struggling with the idea of becoming someone who might need help.

  • Have you found yourself feeling resentful when family, friends or strangers try to assist with something?
  • Have you resisted using a complimentary wheelchair (e.g., at the airport or on cruise ship) out of embarrassment?
  • Have you worried that becoming someone who receives help is going to change your lifelong identity?

If you answered “yes” to any of these questions, you are far from alone.  Many PatientsLikeMe members report that learning to accept help gracefully is one of the most challenging aspects of chronic illness.  And it’s not just allowing the help itself, per se, but seeing yourself in a new light, as one member puts it.  It’s not unusual to take great pride in being a superman or superwoman, the type of handy, resourceful person who does it all and is always helping others in the family or community.  This can be part of your self-image, as well as a source of self-esteem.

So what do you do when you are suddenly the person being helped instead of the helper?  It requires a psychological shift, according to our members, that involves letting go of ego and viewing the care and assistance you are receiving as a gift, not an insult.  It also means communicating frequently and lovingly about the issue, so as to address “the elephant in the room.”  If you can manage the task yourself, speak up and say so politely, advises one patient.  Otherwise, practice saying “thank you” and “I love you” with gratitude, encourages another member.  Ultimately, as our members state over and over, the best tools for coming to terms with the realities of your new life are a positive attitude, humor and support from others like you.

Can you relate to this common hurdle?  Join this insightful discussion in our forum or share your thoughts in the comments section.


Psoriasis in Fall: What We’ve Learned

Posted December 7th, 2012 by

Want to connect with and learn from psoriasis patients like you?
Join PatientsLikeMe Now! (It’s free)

Check Out the Fall Psoriasis Survey Results

How do people with psoriasis cope with the drier autumn air? Do they drink more water, use a humidifier in their house or intensively moisturize with a favorite lotion? This was just one thing we set out to discover in our seasonal survey of more than 300 members with psoriasis, a chronic autoimmune condition.

The average age of those who participated was 43, with 74% female and 26% male. What did they have to say? In response to the best way of dealing with the drier air, an overwhelming 71% said, “moisturize, moisturize, moisturize.” 27% agreed that drinking more water was the most effective way to keep your whole body hydrated, and only 2% said that humidifiers worked for them.

How Our Survey Respondents Cope With Drier Air

We also asked how psoriasis affects quality of life, including social activities, sports, personal relationships and more. These important lifestyle factors were captured using the Dermatological Life Quality Index (DLQI).  Internally, PatientsLikeMe refers to DLQI ratings as a person’s “skinpact” because it quantifies how much of an impact psoriasis can have on your lifestyle.

To share what we learned, we’ve put together a new Patient Voice report entitled Uncovering Psoriasis. Don’t miss this in-depth look at how our psoriasis patients rated their “skinpact” this fall along with what specific factors can increase it, from age to the location of an outbreak to the percentage of the body covered with itchy, red plaques (a measurement known as the Body Surface Area or BSA score). Also, discover how many of our respondents get annual flu shots.

The Cover of Our Latest Patient Voice Report on "Uncovering Psoriasis"

Interested in other seasonal psoriasis insight?  Find tips about living with psoriasis during the summertime in our previous report.

Want to connect and learn from psoriasis patients like you?

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A Day in the Life of Health Data and Patient Safety Clinical Specialist Christine Caligtan

Posted December 5th, 2012 by

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features PatientsLikeMe employees from different departments.  Today we’d like to introduce you to Christine Caligtan, RN, MSN, a registered nurse who has served as our Health Data and Patient Safety Clinical Specialist since May 2011.  Find out what that involves, why she made the switch to the health startup world and much more in our interview.

PatientsLikeMe Health Data and Patient Safety Clinical Specialist Christine Caligtan, RN, MSN

1.  What’s it like to be a registered nurse at a health startup?

I could not be happier as a registered nurse at PatientsLikeMe. It’s the best of both worlds: I get to interact with patients online, and I am satisfying the informatics side of my interests by working the patients’ data and fostering their ability to track and maintain their health with online tools.

When I started working as a nurse I never thought my career path would lead me to a health startup. As I encountered different clinical settings and patient experiences, I knew that technology was the key to advancing healthcare.  From that point, I decided I wanted to work in the field of nursing informatics. The first step in that direction was when I was asked to join a multi-disciplinary team to help build and design an electronic health record (EHR) for a hospital in New York City.  Linking the patients and the healthcare team to the power of technology is extremely satisfying.

I first learned about PatientsLikeMe when I was in grad school.  I was taking a course called Consumers and Interactive Healthcare, and my professor and advisor Lena Sorenson shared with us some of the innovative health companies for consumers, and PatientsLikeMe was one of them! In fact, Lena encouraged me to apply to PatientsLikeMe since I was looking for a shift in my career.  It has turned out to be a perfect fit.

2.  What kind of projects are you working on right now?

We have been working on some improvements for our epilepsy community, making existing tools easier to use and investigating how to better connect doctors and patients. Then, on a daily basis, David Blaser, our Health Data and Drug Information Clinical Specialist, and I curate the data that our users submit to us. Any time there is a condition, treatment or symptom that our users cannot find in our database, we review it and add it to our growing database of patient-reported data. Our job is to ensure we maintain structure and organization with all of the data.

3.  You lead weekly yoga classes for PatientsLikeMe staff.  Tell us about that.

One of the definite highlights of my job! Every Wednesday I have the privilege of leading a small group of staff in a 90-minute Hatha/Vinyasa yoga class. I completed my teacher training during the summer of 2011 at South Boston Yoga. When I came back from training, there was a lot of interest and support in having me teach at work. It’s been a lot of fun and has helped me grow my practice in so many ways.

Christine Leading a Yoga Class at PatientsLikeMe Headquarters

Every week we roll out our mats and practice yoga together. All of my office mates know that Wednesdays at 5pm in Siberia (our back office space) is yoga time.  To counter the frenetic energy in the office, I like to begin class with meditation and some grounding poses and then slowly turn up the heat with the more challenging poses. We practice together to honor the time and space that we create for ourselves so that we can be our best selves.

4.  What are your three favorite things about working at PatientsLikeMe?

I am in constant amazement of the dedication to creating a meaningful experience for our patients and clients. I like our office camaraderie and commitment to creating change within healthcare. And of course, I love our weekly Wednesday yoga days. We rock out, sweat and play, and that’s my ideal end to a work day.

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Interested in making a difference in patients’ lives?  Check out our Careers page to see our current job openings.  Headquartered in Cambridge, Massachusetts, PatientsLikeMe is looking to hire an Analytics Strategist / Data Scientist, Chief Technology Officer, Data Visualization Engineer / Chart Developer and more at the moment.


PatientsLikeMe and Dr. Max Little Team Up to Advance Parkinson’s Research Through the Patient Voice

Posted December 3rd, 2012 by

TED Fellows Call on Parkinson’s Patients to Help Screen, Monitor Disease Progression

CAMBRIDGE, Mass. — December 3, 2012 —Today, Paul Wicks Ph.D., director of research for PatientsLikeMe, and Max Little, Ph.D., founder of the Parkinson’s Voice Initiative (PVI), kick off a partnership to advance Parkinson’s disease (PD) research through the sound of the patient voice. The two TED Fellows, whose collaboration was recently highlighted on CNN’s “The Next List with Dr. Sanjay Gupta,” are calling on PatientsLikeMe members to record their voices and update their own health profiles to keep track of their disease status.

PatientsLikeMe and PVI have joined forces to further validate Dr. Little’s discovery that the voice can be used as a biomarker for disease progression. Dr. Wicks says, “If Max’s work proves out, this could mean that the cell phones we all carry may be the key to the best biomarker for Parkinson’s disease. The project could also lead the way in lowering the cost and accelerating the discovery of the next generation of treatments. It’s an honor to collaborate with Max and our patients on such transformative work.”

PD is a progressive disorder of the nervous system affecting 6.3 million people worldwide. In a recent TED talk, Dr. Little explains it’s expensive and time consuming to detect the disease early on, and nearly impossible to objectively measure the disease’s progression outside of clinical trials. Through a simple phone call, Dr. Little is testing if the tremors in a voice can be used to diagnose, measure and even assess the effectiveness of PD treatments.

Dr. Little adds, “Voluntary patient registries like the one Jamie Heywood and his team have pioneered are becoming crucial for researchers like me to accelerate and transform discovery. Our work with PatientsLikeMe will help us further validate our research by giving PVI access to more people, and more information, in real time.”

PVI has combined a digital microphone, precise voice analysis software and the latest advances in machine learning to create an unconventional method for automatically screening and monitoring PD. To learn more about the PVI and PatientsLikeMe, visit www.patientslikeme.com/join/pvi.

About PatientsLikeMe
PatientsLikeMe is a patient network that helps improve lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. PatientsLikeMe has become a trusted source for real-world disease information and a clinically robust resource that has published more than 25 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.