13 posts from January, 2012

The Personalized Medicine World Conference in Photos and Tweets

Posted January 30th, 2012 by

PatientsLikeMe Co-Founder Jamie Heywood at the Personalized Medicine World Conference

Last week, PatientsLikeMe Co-Founder Jamie Heywood had the honor of speaking at the Personalized Medicine World Conference (PMWC), a two-day event held at the Computer History Museum in Silicon Valley.  His presentation was entitled “Patient Driven Convergence of Clinical Discovery and Care.”  In recognition of the conference’s venue as well as the role that technology plays in personalized medicine, we decided to share some of the “tweets” that Jamie’s talk generated on Twitter.


Ruby Gadelrab (@DivaBiotech) tweeted:  “James Heywood, PatientsLikeMe, starts presentation with very poignant picture of his brother suffering from ALS.”


Ron Ribitzky, MD (@RonRibitzkyMD) tweeted:  “James Heywood of PatientsLikeMe at PMWC: Industry develops systems that can impact if people live or die, but not giving it to them.”


Shirley Wu (@shwu) tweeted: “Heywood of PatientsLikeMe:  At events like this, I often see tech searching 4 problems, not well-defined problems searching 4 solutions.”


Ribozyme (@ribozyme) tweeted:  “JH PatientsLikeMe:  If they (were to) add genotype data it would be a huge phenotype-genotype correlation study.”


Daniel Kraft, MD (@daniel_kraft) tweeted:  “Talk from @PatientsLikeMe.  Reduced ER visits by 18%. ‘Predict the future so we can change it.’”

Are you part of the Twitterverse too?  Follow us @PatientsLikeMe today.  We’re just 25 people shy of reaching 5,000 followers!

2011 “Wow Week” Highlights

Posted January 27th, 2012 by

Last June, we shared how our award-winning Clinical Trials tool was a product of “Wow Week,” which takes place every sixth week here at PatientsLikeMe.  It’s essentially our version of Google’s “20-percent time,” or a period of unstructured time where our engineers have the freedom to work on their own ideas.  We believe it fosters passion, experimentation and risk-taking.  In fact, we know it has given how many other site improvements were conceived during “Wow Week” in 2011.

The list is quite long (kudos, engineering team!), so we singled out three “Wow Week” projects that seemed to really resonate with our 128,000+ members.


Engineering Team Credits: Amy Newell, Doug Martila, Ben Zack and Scott Listfield

For women, your menstrual cycle can be intricately tied to your health condition(s), as well as how you feel. Now, with MyCycle, you can monitor your cycle length, view it next to your other health information and predict the next start date.  (If you’re a female who has not indicated your gender on your basic information, you’ll need to do so in order to receive access to this feature.)

A Look at the MyCycle Feature at PatientsLikeMe

Fuzzy Dates

Engineering Team Credits: Jeffrey Chupp (no longer with the company) and Michael Berkowitz

Are you often fuzzy about your dates?  So are most people.  In recognition of the fact that photographic memory is a rare trait, you can now specify dates with varying levels of accuracy or “fuzziness” – the year (2008), the year and month (May 2008) or the full date (May 22, 2008).  Whatever you can remember is better than no data at all!

Entering Dates at PatientsLikeMe Got a Lot Easier in 2011

Mobile InstantMe

Engineering Team Credits: Steve Hammond, Thomas Mayfield, Joe Rodriguez, Keenan Brock, James Kebinger and Doug Martila

For InstantMe (our daily log of how you’re feeling) to be more instant, we needed an app, right?  This mobile website/application uses HTML5 to support the tracking of your InstantMe scores on your iPhone, iPad or Android smartphone.  Learn more about what it can do here.  (Note that this feature is now open to all members, regardless of their star level.)

Feeling Good in the Grocery Store?  Take the InstantMe Survey on your iPhone!

Are we right?  Did these new tools and features add more “Wow” to your PatientsLikeMe experience?  We’ve love to hear your thoughts in the comments section.  And as always, stay tuned to our Release Notes page for the latest technology updates and innovations.

PatientsLikeMe member wpeterson

A Peek at the January Newsletter for Members

Posted January 26th, 2012 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our January edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.


Have you been told, “But you don’t look sick”?  You’re not alone.  In our November newsletter, we mentioned how many of you use “The Spoon Theory” to describe the realities of your condition to others.  From MS to fibromyalgia to depression, “The Spoon Theory” has become such a popular analogy that it has its own forum tag.

Find Out What "Spoons" and "Forks" Mean in Patient Parlance

The idea is that patients living with a chronic illness have only a small number of spoons to use each day.  As a result, they must carefully choose how they expend their energy, as each task or effort costs one spoon.  If they use up all their spoons too early, that’s all they can manage for the day.  The drawer of spoons is empty.

If you’ve found “The Spoon Theory” helpful in getting friends and family to understand, you may be interested to hear there’s a new (and quite humorous) companion analogy called “The Fork Theory,” developed by MS member OldSalt. Unlike spoons, forks are not something to cherish, but the very things that cause you pain and discomfort.  Every day, the forks poke you, get in the way and pose challenges.  You can try to put them in a drawer, but they’ll always return when you least expect.

Can you relate to this notion of “battling forks” throughout your day?  If so, perhaps your friends and family can too.

Kate, Emma, Liz, Jeanette & Sharry

Kate"" Emma"" Jeanette"" Sharry""


What’s happening in the forum?  Check out some of these active threads below.  Then jump in with your own questions and answers.

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.


The new Tools section (found in your profile sidebar) contains some oldies but goodies like your 3-Star Guide and Doctor Visit Sheet.  But it also has some new additions like Patients Like Me. This is where you can see a match up of all the patients who are like you and explore their recent activity.  It’s also the easiest place to find new members to follow.  (Looking for even more people to follow? Invite Others to join PatientsLikeMe.)

The New "Patients Like Me" Feature Is Found in the "Tools" Section of Your Profile Sidebar

A New Way to Import “Blue Button” Patient Data from the VA

Posted January 23rd, 2012 by

Download the PatientsLikeMe Open Source BlueButton Parser

I love the conveniences that come from having my data moved around online (with my permission, of course).  For example, TurboTax will pull all my information from my investment bank and the IRS, and then calculate how much I owe.  With me doing hardly anything, I’m done in about 20 minutes!   Similarly, Mint.com can pull in my bank and credit card transactions to scold me about how much I’m over-spending on Amazon and restaurants.

Sadly, my healthcare data is not nearly as portable or accessible as my financial data.  It’s a shame, because there are many talented people in health start-ups who want to build tools to help people make sense of their health data.   It’s been 15 years since HIPAA was passed to promote this accessibility and portability of data, but many obstacles have gotten in the way of implementation:  debates about data standards, the cost of updating information systems, debates about whether patients should really own their data and more.

The "Blue Button" Initiative Allows Veterans to Download Their Personal Health Data with One Click

This is exactly why the U.S. Department of Veterans Affairs (VA) should be commended.  The VA cut through these obstacles and implemented data download for all the veterans using their “My HealtheVet” online health services portal.  With the click of a single button, users can now download appointment information, medication histories, lab results and more.  To date, nearly a half million veterans have already downloaded their data.  What’s more, the VA is encouraging other health providers to follow their lead:  they would love to see every health portal have a big, blue button that allows users to download their data with a single click.  They are calling this the “Blue Button” initiative.

Blue Button is an ambitious undertaking, and we’re just beginning to understand its potential.  However, Blue Button doesn’t necessarily make it easier for a patient to move data to other services.  In fact, there are no data formatting standards for Blue Button, a decision meant to motivate providers to participate because they wouldn’t get bogged down in an argument about which standard is best (for example, Continuity of Care Document (CCD) vs. Continuity of Care Record (CCR).)   This lack of standardized data output means it will be more work for any third-party services that want to import it.

Moreover, the VA’s implementation of Blue Button for My HealtheVet poses some additional challenges for data portability.  The sample data export from My HealtheVet is just a free-text file with very little structure to it.  While it is easily read by humans, it is not in a format that can easily be parsed by computer programs, such as XML or comma-separated-value (CSV) files.

To help facilitate the portability of the VA’s Blue Button download data, PatientsLikeMe is releasing an open-source Blue Button parser, which translates the free-text data file into structured data.  Our goal is to make it easier for programmers to use this data for their own applications, or even for building tools to translate the data into a more established health data standard like CCD or CCR.  Because the parser is open-source, it is not only free, but improvements made by any developers can be contributed back so that others may benefit.  We believe sharing is a good thing.

There actually have been a couple prior attempts at parsing the My HealtheVet records to date.  One person made a great start at an online tool for parsing My HealtheVet  files.  Also, Microsoft’s HealthVault service will read Blue Button VA files, but, as far as we can tell, the parser they use for this is not available as open source yet.

The lack of a defined data format “standard” for BlueButton frees us from endless debating over nuances of one standard versus another, but at the cost of data portability. PatientsLikeMe believes Blue Button can be even more powerful if patients have more options for what they can do with that data.  By releasing a standard open-source parser, PatientsLikeMe hopes to give providers and other services a way to participate in Blue Button without worrying about the lack of definition.

What does this mean for patients?  Hopefully we’re a little bit closer to all having a Mint.com for our health.

PatientsLikeMe member jcole

Enter the Healthy New Year Video Challenge

Posted January 20th, 2012 by

Did you make a health-related New Year’s resolution?  And are you using technology—such as a smartphone app or website—to achieve your goal?  Create a short video about it, and you could win prizes ranging from $250 to $2,000 if your video is selected as one of the best!

Learn More About the Healthy New Year Video Challenge

Sponsored by the US Department of Health and Human Services (HHS) and conducted via Challenge.gov, the Healthy New Year Video Challenge invites you to create a compelling video (2 minutes or less) about a New Year’s resolution for improving your health or that of a loved one, and how you will use technology to achieve your resolution.

“In order to empower individuals to be more active partners in their health, they need access to their information and tools they can use,” said Farzad Mostashari, M.D., Sc.M., national coordinator for health information technology.  “We are excited to harness the creativity of ordinary Americans to help promote the positive impact of the myriad health information technology tools and services on health and health care.”

For PatientsLikeMe members, you’re already using technology (meaning, our online health community!) to monitor and improve your health.  Here are some sample resolutions involving PatientsLikeMe that might make for a great video submission:

  • Enter my complete health data at PatientsLikeMe so that I can spot correlations and patterns on my profile charts.
  • Find out what PatientsLikeMe members with the same condition(s) are doing about a symptom that’s frustrating me.
  • Chart my daily moods using PatientsLikeMe’s InstantMe survey to see what factors are affecting my mental health.
  • Add my Lab and Test results at PatientsLikeMe so that I – and others like me – can learn from them.

How Do Health and Technology Intersect in Your 2012 New Year's Resolutions?

All video submissions are due on Friday, February 16th, at 5:00 p.m. EST, so start brainstorming.  The idea is to inspire, motivate and educate others in a unique way, as all winning videos will be featured at HeathIT.gov.  For more details and contest guidelines, visit the contest website.

New to Health 2.0? Join the 125,000+ others at PatientsLikeMe to find information and support from those just like you – and begin monitoring your health with a host of tools and measurements. Cheers to health and technology in 2012!

A Day in the Life of PatientsLikeMe User Experience Engineer Cris Necochea

Posted January 19th, 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 various employees from different departments.  Last month, we featured an interview with Research Scientist Mike Massagli, PhD, and today, we share our interview with User Experience Engineer Cris Necochea, who holds the distinction of being the very first PatientsLikeMe employee.  Find out what convinced him to join PatientsLikeMe as a fledgling start-up…and why he’s stayed for the long haul.

PatientsLikeMe User Experience Engineer Cris Necochea

1. You’re a User Experience Engineer at PatientsLikeMe. Tell us what that involves.

At PatientsLikeMe, we use a methodology called Agile Scrum, where our focus is on the quick turnaround of short, attainable goals, usually in a two-week period. It’s fast-paced and never boring. Our engineering team is made up of around 10 Engineers, a Product Manager, a Designer and two User Experience Engineers, all under the direction of our Director of Engineering, Steve Hammond.

My focus is on translating the visual designs into a usable and accessible user interface. However, at PatientsLikeMe, we all have a lot of shared responsibility for driving the direction we take with the user experience. Given our short cycles of releasing website updates every two weeks, it’s invaluable to have every member of our team focused on what is most important for the patient. We don’t always get it right the first time, but we take the feedback we get from our members to constantly improve the user experience.

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

Currently, we’re wrapping up a long project that will allow our members to describe more about their health experience in the context of the information they already share. We have been testing this for a while with patient volunteers, and the feedback we have received is very positive. We believe it will encourage even more sharing, which, in turn, will build the body of medical knowledge. That’s our ultimate goal.

Aside from that, I’m working on some features to improve the accessibility of the website. Based on feedback of a patient who uses assistive technology (AT), we’re trying to cut down the number of steps to access the essential features on our pages.

3. What do you like best about being a part of the PatientsLikeMe team?

Our team environment, like our entire company culture, is highly collaborative and based around lots of direct communication. Our weekly Journal Club presentations with outside speakers are a highlight, but we also have regular company presentations on what we’re working on, as well as informal “brown-bag” presentations on technical subjects and the like. Sharing is a focus even for the employees at PatientsLikeMe. It helps that the people we have are the smartest I have ever worked with, and they are passionate about the company’s mission.

On a more personal note, our team keeps it witty and light-hearted. It’s always fun to be in the office, but even on days when we work remotely, the laughs keep rolling over our team collaboration tools.   As an aside, I’d like to point out that PatientsLikeMe is hiring. If you enjoy working with hilarious and talented folks that are trying to help people, maybe you’d like to look at our Careers page.

4. As someone who’s been with the company since the early days, what’s the PatientsLikeMe milestone that you’re most proud of?

That’s a very interesting question. I think being the very first employee at PatientsLikeMe is what I’m most proud of. When I received the call from Co-Founders Jeff Cole and Ben and Jamie Heywood about what they were putting together, I had little hesitation about joining an effort that was aimed at helping improve the lives of patients.

Through that time, we have contributed legitimate scientific discoveries and built a team of people who excel in their fields in the service of a mission that is bigger than any one of us. I couldn’t have predicted that we would succeed when I started here in 2005, but I believed enough in the goals of PatientsLikeMe to make the leap. Seeing what we have accomplished in that time is the most gratifying thing of all.


Interested in joining our engineering team and making a difference in patients’ lives?  Check out our Careers page to see our current job openings.  Headquartered in Cambridge, Massachusetts, PatientsLikeMe is looking for a Senior User Experience Designer and Experienced Ruby on Rails Developers at the moment.

Women: Protect Yourself Against Cervical Cancer

Posted January 17th, 2012 by

Each year in the US approximately 12,000 women are diagnosed with cervical cancer, and more than 4,000 lives are lost as a result. What makes this such a tragic statistic is the fact that cervical cancer can be prevented through vaccines and regular screenings in almost every case.  That’s the all-important message to spread during Cervical Health Awareness Month, which takes place every January.

Attention Ladies!  January Is Cervical Health Awareness Month.

How does a vaccine help prevent cervical cancer?  By blocking the Human Papillomavirus (HPV), a common infection that almost everyone who is sexually active will have at some point.  We now know that cervical cancer is caused by specific strains of HPV, and as a result, researchers have determined that you can help prevent this life-threatening form of cancer by working to prevent the preceding infection.

The three-part HPV vaccine (marketed under the brand names Cervarix and Gardisil) is available for women age 26 and younger.  If you’re within the eligible range and interested in learning more, talk to your doctor about the costs, details and scheduling of this vaccination, which takes place over the course of six months and is now covered by a majority of insurers.  What if you’re older than 26? You can stay vigilant by getting regular Pap exams (recommended from age 21 and up) and taking an HPV test when recommended. That way, you can catch any infections or signs of cancer early, and get treated promptly.

Beyond raising awareness about prevention, there’s also the importance of information and support for those affected.  Have you tested positive for HPV or been diagnosed with cervical cancer?  Connect with others like you – including our 48 members with HPV and 44 members with cervical cancer – at PatientsLikeMe today.

Life with Cystic Fibrosis: Three Teenagers’ Perspectives

Posted January 13th, 2012 by

Unlike most of the health conditions we cover at PatientsLikeMe, cystic fibrosis is one of the few communities where the majority of our members are under the age of 29.  In fact, approximately 60% of our 440 cystic fibrosis patients report that they either fall in the 0-19 or 20-29 age brackets.

A Snapshot of the Cystic Fibrosis Community at PatientsLikeMe

What exactly is cystic fibrosis?  A hereditary disease, cystic fibrosis causes the exocrine (secretory) glands to produce abnormally thick mucus.  This can cause problems with digestion, breathing, body cooling and male reproduction, among other things.  Most people with cystic fibrosis are diagnosed by age 2, although some are not diagnosed until 18 or older.  (The latter individuals usually have a milder form.)

Cystic fibrosis is the most common genetic disorder affecting Caucasians in the US.  It is also the most deadly due to the respiratory complications that can occur.  According to the National Institutes of Health (NIH), millions of Americans – including an estimated 1 in 29 Caucasian Americans – carry the defective cystic fibrosis gene.  To develop the disease, however, a person must inherit two defective genes (one from each parent).

So what’s it like to grow up with cystic fibrosis?  Here’s what three teenagers had to say in a recent discussion in our Lungs and Respiratory Forum:

  • “I had never had any hospitalizations until the summer I turned 16. I was hospitalized for a ‘tune up’ which barely did anything that I noticed. I went back to living life as I normally did. In high school I was on the volleyball team, in two bands and kept up honor roll grades. This past year has been the worst health wise. I have been hospitalized twice and the discussion of a lung transplant has begun. I cannot believe how quickly I went from having an almost totally normal life to living everyday worried about my weight and lungs and health.” – Female, 18 years old
  • “I have some bad days but I’ve never been hospitalized.  This leaves me wondering what the feeling is like to be spending a lot of time in hospitals. I was diagnosed when I was 4, after my mum had tried to convince the doctor for 3 years that something was wrong with me. Without cystic fibrosis (CF), I don’t think I would be the strong person I am today. CF has made me who I am, but I am the only person with CF that I know.  No one in my family has CF so they rarely understand how different I feel, like an outsider sometimes.  But all they say is ‘don’t be stupid, you’re normal.’” –  Female, 17 years old
  • “I was diagnosed at about 3 days old, and I practically lived in the hospital until about 5. Then I was only in once in awhile. The past school year I started to get really sick. And I’m currently in [the hospital] right now. It seems to be every three months I’m admitted, and I always pack a bag on my way to the doc because I know I will be admitted. Life is hard, but I’m thankful it’s not worse. I got to play some sports, and I have my best friend who supports me with everything.  It sucks to see my sisters get up and go to school without worries, and complain about little things. But then again I wouldn’t want any of them to have this.” – Female, 17 years old

This is just a sample of the wealth of experiences and data to be found at PatientsLikeMe.  Dive in today to learn more about cystic fibrosis.

What Do You Know About Thyroid Disease?

Posted January 11th, 2012 by

Let’s start with the basics:  do you even know where your thyroid is?

A small, butterfly-shaped gland located at the base of the neck (just below the Adam’s apple), the thyroid influences the function of the heart, brain, liver, kidneys and skin.  That’s why it’s so important to know if you have a thyroid problem – especially if you’re a woman.  Women are five times more likely than men to suffer from hypothyroidism, which occurs when the gland does not produce enough thyroid hormone for the body to function properly.  Hypothyroidism can cause weight gain, miscarriages, forgetfulness, irregular menstrual periods and numerous other symptoms.

"I Am the Face of Thyroid Disease" Is the Theme of a Campaign Launched to Support Thyroid Awareness Month (Click Through to See Patient Videos and Stories)

January is Thyroid Awareness Month, which means it’s a good time to “check your neck.”  As many as 30 million Americans may have thyroid problems, but more than half of them remain undiagnosed.  To help combat this lack of awareness, two thyroid disease patient advocates – Mary Shomon and Katie Schwartz – have created a new campaign called “I Am the Face of Thyroid Disease.”  It features video messages and photos from around the world to “shine a spotlight on the diversity of thyroid patients and their practitioners, and help overcome the stigma and silence surrounding thyroid disease.”

This diversity can also be seen in PatientsLikeMe’s hypothyroidism community, where more than 2,200 patients (8% of whom are male) report the disease.  Some of the most commonly reported symptoms in our community include cold intolerance, dry skin and lethargy, while one of the top reported treatments is Levothyroxine (branded as Synthroid, Levoxyl, Levothroid and more), a synthetic form of the human hormone thyroxine.  190 patients with hypothyroidism have shared in-depth treatment evaluations of Levothyroxine, detailing their experiences with effectiveness, side effects, cost and more.  These evaluations also contain a wealth of tips and advice.

Some of the Commonly Reported Treatments for Hypothyroidism at PatientsLikeMe

Here’s what one long-time Levothyroxine user writes on her evaluation:

“I have taken this for 31 years now. If you do need to take this, please pay attention how you feel. If you have symptoms such as dry skin and feeling tired all the time, it might be that you’re not getting enough of it. You might need to up the dosage.  If you have heart racing and you’re losing lots of weight, etc., it might be you’re getting too much. Don’t forget to get a yearly blood test to make sure your dosage level is correct.”

We also have a little over 100 patients (12% of whom are male) reporting hyperthyroidism, a less common form of thyroid disease that occurs when the thyroid gland produces too much thyroid hormone.   Some of the most commonly reported symptoms include heat intolerance, excessive sweating and palpitations.  Along with those who have other forms of thyroid disease – including Hashimoto Thyroiditis – more than 8,000 members belong to the Endocrine, Metabolism and Nutrition Forum, where they can discuss their thyroid experiences with others like them.

Think you might have a thyroid problem?  Perform your own “neck check” at home (to detect any bulges or enlargement in your thyroid gland) and/or see your doctor for a thyroid evaluation today.  A simple blood test called the TSH test can tell you whether your thyroid gland is functioning normally.  If you’ve already been diagnosed, gain wisdom from connecting with thousands of others like you at PatientsLikeMe.

Today’s Photo: Texans in Motion for ALS

Posted January 9th, 2012 by

Please meet ALS patient alsgirl (front and center in the wheelchair), who led a PatientsLikeMeInMotion-sponsored team at the 2011 Walk to Defeat ALS in Dallas, Texas.  A longtime PatientsLikeMe member who is part of the ALS Public Registry, alsgirl has been living with this degenerative disorder – also known as Lou Gehrig’s disease – for 16 years.

PatientsLikeMe Member alsgirl and Her Texas-sized Team

Congrats to alsgirl and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your health condition. We’re honored to support you along your journey.  For more PatientsLikeMeInMotion team photos, check out our growing Flickr slideshow.  (And if you’re a PatientsLikeMeInMotion team leader who has NOT sent in photos, we encourage you to do so.  You just might be featured on the blog next!)

Thinking about organizing a team for spring?  Learn more about the PatientsLikeMeInMotion program today.

New Feature for Diabetes Patients – Monitor Your Blood Glucose

Posted January 6th, 2012 by

A few weeks ago, we launched a new blood glucose feature, which allows members with diabetes to record and monitor the concentration of glucose in their blood on a daily basis.  Here’s a look at the resulting profile chart:

The Blood Glucose Profile Chart at PatientsLikeMe

In a recent PatientsLikeMe Poll, 88% of responding diabetes patients said they have a goal for control of their blood glucose.  Many of you on the site have told us before how important it is for you to monitor your blood glucose to treat your diabetes.  With this new tool, you can now easily input your blood glucose levels as often as you’d like—even noting the exact time the test was taken—and see your results over time on your PatientsLikeMe profile.

The glucose chart (pictured above) displays which readings fell outside of the normal range, which is also known as hyperglycemia (when the blood glucose level is too high) or hypoglycemia (when the blood glucose level is too low).  We know some of you are already monitoring hyperglycemia and hypoglycemia on your profiles, but we’re glad that you can now record to what extent your blood glucose levels were out of range.

Were you already monitoring your HbA1c lab results (a test that measures blood glucose control over time) via your profile?  Thanks to the most recent site improvements, you can now drag and drop your labs to view your blood glucose levels and HbA1c results side-by-side.

Do you want to get a better picture of what’s going on with your health, spot trends and, ultimately, take control of your diabetes? Join the PatientsLikeMe diabetes community today to monitor your blood glucose levels and other factors relevant to your health.  If you’re already a member, visit the new Labs & Tests page to add this new feature (or one of our other new labs) to your profile.

PatientsLikeMe member Jeanette DeVita

Glaucoma: The Disease That Steals Your Sight

Posted January 5th, 2012 by

January Is National Glaucoma Awareness Month

Did you know that as much as 40% of your vision can be lost due to glaucoma – without  your notice?

That’s why they call glaucoma the “sneak thief of sight.”  There are no symptoms, and once your vision is lost, it’s permanent.  This is one of the urgent messages of National Glaucoma Awareness Month, which takes place every January.  (And for good reason – according to a National Eye Institute survey, only 8% of Americans are aware of the fact that glaucoma has no early symptoms.)

Over four million Americans have glaucoma, and given its stealth progression, approximately half of them don’t know it.  The leading cause of preventable blindness, glaucoma is more prevalent in African American and Latino populations.  For example, it is six to eight times more prevalent in African Americans than Caucasians.  People who are severely nearsighted, have diabetes or who have family members with glaucoma are also at higher risk.

A Snapshot of the Glaucoma Community at PatientsLikeMe

While there is no cure for glaucoma, there are treatments (including medication and surgery) that can help slow or prevent vision loss.  That’s why it’s so important to have regular eye exams, especially if you are over 60.  The disease can strike at younger ages, though, as the data from our glaucoma community at PatientsLikeMe shows.  Of the 107 members reporting the disease, approximately 60% are between the ages of 40 and 59.

Haven’t been to the eye doctor in a while?  Make an appointment today for your peace of mind.

Our Patients’ Hopes, Thoughts and Resolutions for 2012

Posted January 4th, 2012 by

PatientsLikeMe Members Approach the New Year in Different Ways

Many people look at a new year as a fresh start – a chance to begin new routines, eliminate bad habits and shift priorities.  But not everyone believes in making resolutions.

Here are several different patient perspectives on approaching the new year:

  • “In 2012, I will make daily exercise a priority. Research reveals it is the one thing that may slow disease progression. It also improves overall health and makes us look and feel better.”   – Patient with Parkinson’s disease
  • “I am filled with great hope for us all. In 2011, the pace of research breakthroughs increased dramatically. Most importantly, new research modalities using human tissue have been developed and are already contributing to major breakthroughs in understanding the biopathways affecting ALS. We are closer to a cure than ever.” – Patient with ALS

  • “My resolutions are pretty simplistic:  Sleep hygiene and getting more (sleep, that is). Discontinuing the practice of making long and unrealistic to-do lists.  I’ll start with sleep and go from there.” – Patient with major depressive disorder

  • “I have no expectations that this new year will be any better then the last. That way I don’t get disappointed so whatever does happen will be a bonus.”  – Member with Wegener’s granulomatosis
  • “I’m going to cut out sugar and white flour foods.  I know, I know, I’ve said this before and I’ve done this before, and it’s really hard for me, but it works for weight loss and being able to tap into my energy.  So here we go again, looking towards a healthier 2012.” – Patient with fibromyalgia

  • “My resolution is to do more, no matter what it is.  Smile more, laugh more, cry more, walk more, yoga more, love more, hug more, write more, hurt more, sing more, read more…you get the idea.  I figure more means I’m alive, less may mean I’m dying.” – Patient with Parkinson’s disease

What will you be doing differently in 2012 – if anything?  Share your thoughts in the comments section and read more about exercise, diet and sleep at PatientsLikeMe.