18 posts from November, 2011

How to Thrive: Takeaways from TEDx Cambridge

Posted November 30th, 2011 by

Patient Experience Manager Kate Brigham and I attended TEDx Cambridge last week, a one-day event full of thought-provoking and inspirational talks about Ideas Worth Spreading (TED’s mission). The participants didn’t want to just survive, they wanted to Thrive, which was this year’s theme. Speakers, including our President and Co-Founder Ben Heywood, enlightened the crowd with how we can help ourselves in small ways and inspire others in the process.

The Entrance to TEDx Cambridge 2011

Throughout four sessions packed with 30+ speakers on the topics of Mind, Body, We, and Beyond, many shared how people can improve themselves individually, by being part of a community, and by giving back to others. Some advice is expected—sleep more, drink less caffeine, eat more vegetables, try yoga—but other points were more novel.

For example, we were encouraged by Matt Daniell to try something, anything, for a month as “time becomes much more memorable when undertaking 30 day challenges.” Using research on the effects of body posture on hormones, Amy Cuddy shared that doing a power pose for just a few minutes (like putting your feet up on your desk) is minimal effort, but can benefit your brain as well as others’ perception of you. (Note: she recommended we put our feet up in private, not in a meeting!) One of the lessons that seemed to resonate most was from Priya Parker, who encouraged the audience to not worry about keeping all options open—that it’s FOMO (the fear of missing out) and FOBO (the fear of better opportunities) that contribute to many people’s anxiety and stress.

PatientsLikeMe President and TEDx Speaker Ben Heywood (Center) Along with Brothers Jamie Heywood (Left) and Stephen Heywood (Right), Whose ALS Diagnosis Inspired the Creation of PatientsLikeMe

In addition to Ben talking about PatientsLikeMe, other speakers shared the importance of connecting people with others like them, making data more accessible and empowering patients to take control of their health. Greg Epstein and Jesus Gerena, although in different fields (a Humanist Chaplain and Activist, respectively) arrived at the same conclusion: that when people come together and help one another, the entire group is empowered and everyone benefits.

Our ears also perked up when Sandy Pentland, a social scientist at MIT, discussed how important data is and stated that “personal data is the new oil of the Internet.” Further affirming the importance of data, John Sheffield talked about how he wants to make sure that genomics analysis is accessible, repeatable and shareable. He’s found in his field of data architecture that’s it’s all about connections with others, a point of view we certainly share!

Heart Patient and TEDx Speaker Hugo Campos

One story that perhaps applies most to what we’re doing here at PatientsLikeMe was presented by Hugo Campos, a heart patient who is literally on a quest to liberate data from his own heart. Although he has a high-tech cardiac defibrillator, he doesn’t have access to the data collected by this device. We’re with you, Hugo: “We all have the right to our own health information!”

At PatientsLikeMe, we help people Thrive by connecting patients so that they can share their experiences, find others like them and, together, learn how to best improve their health. From disease-specific outcome scores to our Quality of Life survey and InstantMe tool, we offer all sorts of ways to monitor your health and assess the impact of various treatments and interventions.

How do you help yourself and others Thrive? Share your thoughts in the comments section.  Also, check out the video of Ben’s talk.

PatientsLikeMe member emorgan


Today’s Photo: Uniting for Parkinson’s

Posted November 29th, 2011 by

Please meet Parkinson’s disease (PD) patient Judith, who led a PatientsLikeMeInMotion-sponsored team at the Parkinson’s Unity Walk in New York City last April.  Held annually in Central Park, this massive grassroots event donates 100% of funds raised to PD research.

Judith and Team Members at the 2011 Parkinson's Unity Walk

Congrats to Judith and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your condition. We’re honored to support you every step of the way.  For more PatientsLikeMeInMotion team photos, check out our Flickr gallery.

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


Are Your Lungs Trying to Tell You Something?

Posted November 28th, 2011 by

Chronic coughing and wheezing.  Frequent shortness of breath.  Struggling for air.  These are some of the symptoms of chronic obstructive pulmonary disease (COPD), which affects 24 million Americans (or approximately one in five adults over the age of 45).  As many as half of them don’t realize they have COPD, however, as many people mistake their slowly worsening symptoms as normal aging or a lack of fitness.

November is National COPD Awareness Month, and the COPD Learn More Breathe Better® campaign, sponsored by the National Heart, Lung and Blood Institute, aims to raise awareness about this under-diagnosed condition.  With a growing prevalence in the US, COPD – which includes emphysema and chronic bronchitis – is now the third leading cause of death in the US as well as a significant cause of long-term disability.

While COPD can have environmental or genetic risk factors that lead to its development in non-smokers, the disease most often occurs in people age 40 and over with a history of smoking (either current or former smokers).  Smoking is the most common cause of COPD, accounting for as many as 9 out of 10 COPD-related deaths.  Thus, quitting smoking now can reduce your risk.  (Worried about your ability to quit?  Read our recent Great American Smokeout blog for motivation, resources and support.)

A Snapshot of the COPD Community at PatientsLikeMe

If you’ve been diagnosed with COPD, connecting with other patients like you can help you learn how to live better with the condition.  331 patients report COPD at PatientsLikeMe, with 44 listing it as their primary condition.  Some of the common treatments they report include Budesonide, Fluticasone, Prednisone and Oxygen Therapy.  (Click on each name to see the treatment evaluations submitted by our patients, who share their experiences with effectiveness, side effects, cost and more.)

Not sure if your breathing problems might be COPD?  See your doctor for a simple breathing test known as spirometry.  The earlier you get diagnosed and treated, the sooner you can begin to breathe a little easier.


What Patients Are Thankful For

Posted November 23rd, 2011 by

Thanksgiving is a time for remembering all the reasons you have to be grateful.  For patients who face numerous health challenges, this can mean reminding yourself of all the things you have gained – not lost – since your diagnosis.

A Snapshot of PatientsLikeMe Members

One theme that we’re especially proud to hear our 120,000+ members express is how thankful they are to have found a community of people who truly “get” them at PatientsLikeMe.  Our founders envisioned a way to connect patients with others just like them – so they could learn from each other, support each other and help accelerate the pace of medical research – and today, it’s become a reality.  Touchingly, it’s also been the start of many important friendships among our members.

Here are some patient stories that moved us this year:

  • “The people on this site deserve more than a simple thank you from me.  The night I found PatientsLikeMe was about eight hours after my neurologists had told me, ‘You have non tremor Parkinson’s disease.’ That night I had some stinking thinking going on.  I considered myself a freak.  Thanks to this site I now consider myself unique.  We are all unique. To my Parkinson’s brothers and sisters, a big THANK YOU for helping me get away from my stinking thinking.”  – Patient with Parkinson’s disease
  • “This is the place where we can wonder what is next, cry about what is now and rant about how unfair it all is to us.  Here we are among friends and patients just like us who know have been there or will be going there. It is so much better for me to be on PatientsLikeMe then to just rant to my family and boyfriend.  I figure we can all listen to someone’s rant as tomorrow it may be us.” – Patient with ALS
  • “I called one of our members for the first time.  We were on the phone for over three hours!  Every connection I’ve made here that has progressed to the phone call stage has been like that.  This is the best, most fun, most supportive group of guys and gals that I think I have ever come across.  At PatientsLikeMe, we may all come from different walks of life, different locations and yes sometimes different opinions, but here we share such a unique and caring bond.  I’m so lucky to have found PatientsLikeMe.” – Patient with fibromyalgia
  • “I have found that I am better able to deal with my moods now that I am able to relate to others with the same/similar problems. It helps to rant. It helps to talk with people who understand. PatientsLikeMe has helped me to understand myself better too. YAY. I love PatientsLikeMe.” – Patient with bipolar II disorder
  • “In large part, my success at escaping that life of depravity, depression and addiction is due to the sense of belonging I found at PatientsLikeMe. I was encouraged, and loved and, yes, even put in my place a few times. Even though my path has been neither straight nor smooth I feel that I have my friends on PatientsLikeMe to thank for the sunlight in my life.” – Patient with HIV

No one should have to go through the experience of chronic illness alone.  If you’ve already realized you’re not alone in your journey, we give thanks for you…and every patient like you.

Happy Thanksgiving!


Results from PatientsLikeMe Diabetes Poll

Posted November 22nd, 2011 by

FOR IMMEDIATE RELEASE

PATIENTSLIKEME POLL REVEALS UPCOMING HOLIDAY SEASON MOST DIFFICULT FOR DIABETES PATIENTS CONTROLLING BLOOD GLUCOSE

PatientsLikeMe Introduces Daily Glucose Monitoring Feature in December

CAMBRIDGE, MA – November 22, 2011 – According to a recent PatientsLikeMe® Poll, one out of every two type 2 diabetes patients (50%) and nearly two out of every three type 1 diabetes patients (65%) say having diabetes affects their holidays.  More than half of respondents (59%) say the upcoming holiday season, marked by Thanksgiving and Christmas, is most difficult for controlling blood glucose; 25% don’t find the holidays difficult.  When asked what strategies they use if their blood glucose rises after increased consumption during the holiday, diabetes patients had mixed responses with three in four type 1 patients (76%) changing their medication dosage, while type 2 patients try alternative things like more exercise (34%) or just avoiding glucose-raising items altogether (34%).  Two hundred and twenty-six (226) diabetes patients sharing their health data on PatientsLikeMe.com responded to the poll.

A Word Cloud of Terms That Appeared Six or More Times in Our Poll Respondents' Freeform Comments

“This week represents the beginning of a challenging season for diabetes patients faced with group meals and gatherings that could impact their health,” says Ben Heywood, President and Co-founder of PatientsLikeMe.  “We all have family or friends with diabetes and these poll results give a glimpse into some of the challenges they face and the strategies they use to overcome them.”

Are diabetes patients sensitive about discussing their disease with family and friends at the table during the holidays? An overwhelming 90% say no.  However, more than one in three patients (38%) still feel friends and family don’t understand how diabetes affects them during the holidays.  With holiday meals and parties so prevalent over the next six weeks, many of the respondents (84%) say they manage with what’s available, while 16% make some adjustment to accommodate for their diabetes (7% host to be in control, 7% eat before going out and 2% bring their own meal).

Highlights of the Recent PatientsLikeMe Poll (Click for Full Results)

PatientsLikeMe will introduce a daily blood glucose monitoring feature for its 2,000+ diabetes patients in early December. Patients will be able to report daily glucose levels, as well as continue sharing and learning from HbA1c scores (used to monitor the glucose control of diabetics over time), treatments and dosages (such as Metformin or insulin) and symptoms and severity (including blurry vision, excessive thirst and fatigue).  In recognition of Diabetes Awareness Month, PatientsLikeMe recently collaborated with industry and nonprofit partners to launch the CallingAllTypes (www.callingalltypes.com) campaign in an effort to help raise awareness and funds for the disease.

NOTE TO EDITOR: The complete PatientsLikeMe® Poll results can be downloaded here. All poll results must be sourced as originating from PatientsLikeMe®.

PatientsLikeMe® Poll Methodology
Between November 14th and November 18th, PatientsLikeMe invited all diabetes members to participate in the PatientsLikeMe® Poll, with 226 members completing the poll. Respondents represent patients with both type 1 diabetes (24%), where patients are usually diagnosed at a young age and need to daily blood glucose monitoring and insulin therapy, and type 2 diabetes (73%), where patients develop the condition gradually over time typically due to environmental factors resulting in increased blood glucose levels. In this poll, more than 200 respondents shared their HbA1c scores, with 49% reporting a score of 7.0 or lower (which represents well-controlled glucose).

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 www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]


Do the Holidays Give You Heartburn?

Posted November 21st, 2011 by

Overeating on Thanksgiving is a tradition in many households – one that can produce some very uncomfortable results.

It is no coincidence, then, that November 20 – 26th is the 13th Annual GERD Awareness Week.  Affecting up to 1 in 5 adults in the US, gastroesophageal reflux disease (GERD) is a condition that develops when the backflow (or “reflux”) of stomach contents causes troublesome symptoms and/or complications.  The most common symptoms are chronic heartburn and acid regurgitation.

A Snapshot of the GERD Community at PatientsLikeMe

What can you do to treat GERD?  According to the 1,055 patients who report GERD at PatientsLikeMe, some of the commonly prescribed treatments include Omeprazole (Prilosec), Lansoprazole (Prevacid), Esomeprazole (Nexium) and Ranitidine (Zantac).  Click on each medication name to see the treatment evaluations submitted by our patients, who share their experiences with effectiveness, side effects, cost and more.

Then, there’s also watching what you eat.  While GERD is not caused by diet, it can be aggravated by certain habits.  To make this Thanksgiving a little more pleasant, consider avoiding the following foods and beverages:  chocolate, onions, fried foods, acidic foods, fatty foods, peppermint, caffeine, carbonated beverages and alcohol.  Eating late at night can also contribute to nighttime heartburn that leaves you restless and sleep deprived.

Ready to take control of your GERD before it threatens another holiday?  Join PatientsLikeMe to share your experiences, find support and learn from other patients like you.  That way, you’ll head into Thanksgiving armed with a little more knowledge and a lot more people who can relate.


Is Today the Day You Quit Smoking for Good?

Posted November 17th, 2011 by

Join the Great American Smokeout and Reduce Your Risks of Cancer

That’s what the American Cancer Society hopes.

Today, November 17th, is the Great American Smokeout, now in its 36th year.  It’s a day for quitting smoking or making a plan to quit.  The reason for doing so is pretty compelling:  tobacco use is the single largest preventable cause of disease and premature death in the US.   Despite that, there are still more than 46 million American smokers, which is approximately 21% of the adult population.

Have you tried to quit smoking in the past year?  So did at least half of the current smokers in this country.  Quitting isn’t easy, but it’s easier when you have support.  Take the “Do You Need Help Quitting?” Quiz to determine your level of nicotine addiction as well as the kind of personal cessation plan you’ll need.  For extra motivation, check out the health benefits of quitting over time (which start as soon as 20 minutes afterwards!) as well how much money you could save by quitting.

A Snapshot of the Tobacco Addiction Community at PatientsLikeMe

Another way to find support is to connect with other smokers who are trying to quit.  PatientsLikeMe considers tobacco addiction a health condition, which is why we include it in our platform.  3,914 of our patient members say they are addicted to tobacco, with 1,263 of them officially diagnosed.  What are their methods of quitting?  Two commonly reported treatments are Buproprion (Wellbutrin), an antidepressant used as an adjunct for quitting smoking, and Varenicline (Chantix), a drug that blocks the pleasurable effects of nicotine on the brain. (Click each name to read our patients’ evaluations of effectiveness, side effects, cost and more.)

The bottom line is you don’t have to quit alone.  Join PatientsLikeMe and do it together.


Giving Caregivers the Recognition They Deserve

Posted November 16th, 2011 by

“The true strength of the American family finds its roots in an unwavering commitment to care for one another.”

– President Barack Obama

November is National Family Caregivers Month, “a time to thank, support, educate and empower family caregivers.”  There are more than 65 million family caregivers in the US who day in and day out fulfill a vital role on the care team for a family member.  They also tend to be the most knowledgeable person when it comes to daily treatment, diet and exercise regimens for the person they love.

November Is National Family Caregivers Month

The theme for National Family Caregivers Month 2011, sponsored by the National Family Caregivers Association (NFCA), is “Identifying Family Caregivers.”  The goal is to encourage both caregivers and medical providers to ask for a designated space on every medical intake form for a caregiver name.  Otherwise, the NFCA argues, caregivers are “invisible in American healthcare.”

In contrast, caregivers play an important and prominent role in PatientsLikeMe’s “CareTeam” concept, which was developed to include everyone who is actively involved in the care of our patient members.  That could be a spouse, partner, parent, child, doctor, home health worker, relative or friend.  Patients can invite anyone on their real-life CareTeam to join PatientsLikeMe and be linked directly to their profile.

Currently, there are more than 7,000 caregivers using PatientsLikeMe.  (Browse their profiles.)  Here is a sampling of their stories and situations:

  • “I am a mother who would like to know more about bipolar disorder and know how I can help my daughter, and let her know I care.”
  • “I am a caregiver for my wife, who has generalized epilepsy. I have allocated a big part of my life to help my wife become more stable.”
  • “In 2005 my husband was diagnosed with young onset Parkinson’s disease and through my desire to be the best caregiver possible I forgot about me.”
  • “My husband was diagnosed with ALS at age 47 in June 2007 on our 25th anniversary.  It’s hard to see not only his body deteriorate but his spirit too.”
  • “For decades, I have been caring for members of my family and community regarding mental illnesses and life challenges, mostly my beloved auntie.”
  • “On July 6, 2008, my partner got results saying he was HIV positive. It was a hard night for us, we cried and talked and cried some more.”
  • “I am 30 years old. I am one of the caretakers for my father who was diagnosed with ALS when I was 8 years old.   I try to be there for him as much as he needs.”

Are you a caregiver?  We encourage both you and the patient in your life to join PatientsLikeMe to share your experiences, find support and learn from other patients and caregivers.


It’s the Season for Seasonal Affective Disorder

Posted November 15th, 2011 by

Now that daylight savings time has ended, the days are shorter, and before you know it, it’s nightfall.  Has this affected your mood?

Seasonal affective disorder (SAD), also known as seasonal depression, is a condition marked by a period of depression that occurs during the same season year after year.  In most cases, that season would be fall through winter (when there is less sunlight), but for some people, SAD can occur during spring or summer.

An Example of a Light Therapy Box Used to Treat SAD

One of the best ways to learn “what’s normal and not normal?” with SAD is to compare your experiences with other patients. There are 446 patients with SAD at PatientsLikeMe, with 85% of them female and 15% male.  A commonly reported treatment is light therapy, or the use of a special light box that exposes you to bright light.  This mimics the effect of natural outdoor light and appears to cause a change in brain chemicals that positively affects your mood.  (Does it really work?  Check out the 27 treatment evaluations for light therapy that our patients have submitted.)

What’s it like to live with SAD?  Here are some first-hand reports from members of our mental health community, who answered the question “What are your SAD symptoms?

  • “My symptoms tend to be worsening depression and anxiety.  There are no ‘indicator’ symptoms for me – meaning I don’t realize necessarily ‘Oh I’m starting to feel SAD, crap!’  But all of my Major Depressive Episodes (five so far since I was 20) have occurred in November and December.  And looking back, I can see a downward trend in especially depressive symptoms getting worse starting in mid October – such as depressed mood, more frequent crying spells, fatigue, worse insomnia, headaches worsen, weight and appetite changes, and urges to self-injure.  Three of my Major Depressive Episodes led to suicidal thoughts and short hospitalizations.  The other two, I had frequent suicidal thoughts but did not feel in danger of acting upon them.” – Member with panic disorder
  • “[Symptoms are] mild now, but they ran the spectrum from comatose to the walking functional. Kids don’t understand, and our school bus arrived at 6:00 a.m. Needless to say they weren’t hungry, food on the bus = school contraband, so I’d whip up scrambled eggs with cheese and wrap them in a taco shell and tell them to sneak a bite when they got hungry. They just threw them in the bushes for the local dogs to eat. Then I’d watch TV and answer the ever increasing phone calls all day long. If I felt OK, I’d start to prepare for the tornado that was spring.  Nowadays since I don’t have so much responsibility, my symptoms seem mild, but that could change depending on the winds of life events.” – Member with bipolar II disorder
  • “I think it varies year to year in terms of severity.  The March/April period is characterized by an increase in my anxiety levels together with restlessness and restrictive eating. The September/October period is characterized by an increase in my feelings of sadness along with intense carbohydrate cravings and a need to sleep more.  Both periods are marked by problems concentrating.  I notice that the light box really helps with the carbohydrate cravings. I think it might even make me less hungry overall.  It’s not that the cravings go away entirely, but instead they are dampened to the level where I *don’t* find myself eating cookies without realizing how I got them.” – Member with major depressive disorder

Wondering what else they patients have to say about SAD?  Or think you might experience the condition yourself?  Join PatientsLikeMe and take part in this ongoing SAD forum discussion.


Act Now for World Diabetes Day

Posted November 14th, 2011 by

Today Is World Diabetes Day

Today is World Diabetes Day, sponsored by the International Diabetes Federation.  An official United Nations Day since 2007, World Diabetes Day is held every year on November 14th to commemorate the birthday of Frederick Banning.  Along with Charles Best, Banning is credited with the life-saving discovery of insulin in 1922.

Why is there a need for a global diabetes day?  As the United Nations wrote in their 2007 resolution, diabetes is “a chronic, debilitating and costly disease associated with major complications that pose severe risks for families, countries and the entire world.”  Namely, it is the cause of four million deaths worldwide every year, with someone dying every eight seconds from the disease.

The global symbol for diabetes awareness is a blue circle, and supporters everywhere are encouraged to wear blue today to help spread the word about this pandemic.  You can also help get the message out about prevention.  While type 1 diabetes cannot be prevented, research shows that, in many cases, type 2 diabetes can be prevented by maintaining a healthy weight and being physically active.  Regular walking for at least 30 minutes per day, for example, has been shown to reduce the risk of type 2 diabetes by 35-40%.

We recently highlighted type 1 diabetes (and how it differs from type 2) in our blog post, “American Diabetes Month Kicks Off with T1 Day,” as well as our two-part interview with type 1 patient Michael Burke.  Here’s a little more information about type 2 diabetes, which accounts for at least 90% of all diabetes cases worldwide.  At PatientsLikeMe, 1,773 patients report type 2 diabetes, with 68% of them female and 32% male.  One of the most commonly reported treatments is Metformin, an oral anti-diabetic medication prescribed when hyperglycemia (high blood sugar) due to diabetes cannot be controlled through exercise and diet alone.  What do patients say about this drug?  Check out the 125 treatment evaluations submitted by our members, who share their experiences with dosage, side effects, efficacy, cost and more.

Diabetes University Takes Place Every Year on World Diabetes Day in Atlanta, Georgia

With a staggering 366 million people diagnosed with diabetes worldwide – and another 300 million at risk – it’s imperative that diabetes awareness and knowledge grow faster than the disease itself.  The new “Calling All Types” diabetes awareness campaign – an initiative of PatientsLikeMe and our partner BBK Worldwide – helped mark World Diabetes Day this past weekend at the Diabetes University 2011 event in Atlanta, Georgia.  Now in its 18th year, this event works to educate both medical professionals and the public.  Given that the prevalence of diabetes in Atlanta is a full point higher than the national average, Calling All Types has made Atlanta the focal point of the campaign’s initial awareness-raising activities.

Are you a type 1 or type 2 diabetes patient?  Share your story at CallingAllTypes.com in honor of World Diabetes Day.  For everyone else, “act now” by wearing blue, talking about type 2 diabetes prevention or simply taking a walk around your neighborhood.


Get “Seizure Smart” for Epilepsy Awareness Month

Posted November 10th, 2011 by

Click Here to Take the Seven-Question Quiz and Get Your "Seizure Smart" Completion Certificate

What does it mean to be “seizure smart”?  It means being knowledgeable about how to help in the event that someone has a seizure in your presence.  Given that one in 100 Americans has epilepsy – and one in 10 adults will have a seizure sometime during their life – this type of basic seizure first aid could help save someone’s life at work, at a restaurant or just walking down the street.

In honor of Epilepsy Awareness Month, the National Epilepsy Foundation has created a short interactive quiz that helps you become “seizure smart.”  The goal is to get five million Americans to take and distribute the quiz.  Once you’ve gotten “seizure smart,” you can then help raise awareness and proudly post your completion certificate on Facebook for everyone to see.

Got an affinity for posting things on Facebook anyway?  You’re the perfect candidate for the Get Seizure Smart Photo Contest.  Categories include “Funniest or Silliest,” “Most Impactful,” “Best Animal” and more.  All photos must be submitted by November 30th at 3 p.m. EST.  Learn about other Epilepsy Awareness Month activities taking place each day of the month here.

At PatientsLikeMe, we have 4,456 patients who report having epilepsy, with 71% of them female and 29% of them male.  Some of the most commonly reported symptoms include excessive daytime sleepiness, headaches and memory problems, while some of the most commonly reported treatments include Levetiracetam (Keppra), Lamotrigine (Lamictal) and Topiramate (Topamax).  (Click the links for each of these anticonvulsant medications to read hundreds of treatment evaluations submitted by our patients, who share their experiences with dosages, side effects, efficacy, costs and more.)

If you have epilepsy, join our growing community to share treatment data, support and advice with those who can relate.  For everyone else, get “seizure smart” and help make a difference today – and quite possibly in the future.


Battling the Complications: An Interview with Diabetes Patient Michael Burke (Part II)

Posted November 9th, 2011 by

Last week, in Part I of this interview, PatientsLikeMe member and blogger Michael Burke shared his sister Linda’s struggle with type 1 diabetes.  Today, we learn about his own type 1 diabetes journey, including his June 2011 kidney transplant as a result of diabetes-induced kidney failure.

1.  What diabetes complications have you faced?

PatientsLikeMe Member and Diabetes Blogger Michael Burke

Diabetes is a disease that appears to be misunderstood by most people, in that the consequences of the disease can lead to many different complications.  As I mentioned earlier, both Linda and I suffered from diabetic retinopathy…essentially, you can go blind from diabetes.  Another complication is nephropathy, or kidney disease.  For me, this led to kidney failure and the eventual need for a kidney transplant this past June.

Heart disease is another major complication.  Personally, I never knew that I had any heart disease until one day my primary care physician sent me for a routine stress test.  During the stress test, the cardiologist felt it necessary to immediately admit me to the hospital and do a cardiac catheterization the next morning.  When he did, he found two blockages in my right coronary artery – one was a 90% blockage and the other was an 85% blockage.  I then had several stents placed.  After two years, those stents were becoming ineffective, and I required heart bypass surgery.  Lucky for me, there was a heart surgeon in Boston who was doing bypass surgery robotically.  What this meant for me was a much smaller incision (about an inch and a half compared to the whole chest being opened up), and being a diabetic, less risk of infection and a shorter recovery time.

Another complication is [diabetic] neuropathy, or nerve damage.  Typically, this usually affects the feet, but other parts of the body can be affected as well.  As for Linda and I, the neuropathy is/was primarily in our feet.  For Linda, it was extremely painful, with the feeling that you are constantly being poked in your feet with something very sharp.  For me, the feeling has been quite different, in that there is no feeling, at least around my big toes, which in turn has caused some balance issues for me.  Neuropathy is serious, it’s not just that it is painful for some and a loss of feeling for others.  It can also lead to amputation of your toes, your foot, or in drastic circumstances, part of or all of your leg.

2.  What was your kidney transplant experience like, and how are you doing now?

I went through a whole lot of emotions over the course of getting this new lease on life.  Although I had been prepared by my kidney doctor over the last several years that I was most likely going to need a kidney transplant, the day I sat with the transplant team for the first time was absolutely frightening and surreal at the same time.  It’s hard to explain.

I just remember sitting with the transplant team and when the transplant doctor said, “Ok, we will put you on the transplant list within the next few days, and we will move forward,” my heart was pounding so hard I thought it was going pop out of my chest.  There is also a lot of anxiety that goes along with the whole transplant process.  At first, I didn’t know where the kidney would come from.  I knew there were family members who said that they wanted to be tested and now I was also on the national transplant list.

Michael Burke's Brother and Kidney Donor Tommy

When my brother Tommy was starting the testing process, I kept going back and forth in my head.  It would be great to have someone close to me donate, but then there was the guilt.  If I ever rejected their kidney now they are left with just one.  As it turned out, Tommy was a 5 out of 6 antigen match, and he donated his kidney to me in June.

I had often heard before the transplant that you won’t understand how badly you felt or how sick you were before the surgery until after the surgery.  That could not be a truer statement.  I never really felt sick before, and I have been told that is because kidney disease can be very slow and progressive.  However, looking back today, I can honestly say that there has been a 180 degree turnaround.  I have much more energy and I just generally feel well – it has been a huge difference, and I have Tommy to thank for that.

*********

Are you a diabetes patient as well?  In honor of American Diabetes Month, share your thoughts and stories at CallingAllTypes.com.


PATIENTSLIKEME AND R.A.R.E PROJECT UNITE TO FIND AND CONNECT ONE MILLION RARE DISEASE PATIENTS

Posted November 8th, 2011 by

FOR IMMEDIATE RELEASE

Nonprofit and “Not Just for Profit” Announce Collaboration at PartneringForCures Event

NEW YORK, NY – November 7, 2011 – Today, PatientsLikeMe and R.A.R.E Project, a nonprofit advocacy and support group for patients with all rare diseases, announce a new partnership to find and connect 1 million rare disease patients to share and learn everything possible about their conditions.  The organizations, co-presenting at the PartneringForCures event today in New York, are launching an international rare disease awareness campaign in 2012.

PatientsLikeMe's New Partner, The R.A.R.E Project

“There are 35 million patients in the U.S. with 7,000+ rare diseases and we want to find them, connect them and support them in sharing and learning by their specific disease and across all rare diseases,” says Dean Suhr, Chief Innovation and Community Development Officer at R.A.R.E.  “We’re excited to work with PatientsLikeMe because their open patient registry allows patients to contribute to research, while getting immediate benefits, like improved quality of life, from sharing this information with others.”

The goal of this collaboration between R.A.R.E and PatientsLikeMe, an online health community that started in 2005 for rare disease patients and is now open to everyone, is to allow for better shared learning and acceleration of discovery by rapidly connecting patients to researchers, companies, nonprofits and patients like them. The partners will combine resources to provide patients with the opportunity to make online and local in-person connections, engage nonprofits and local specialists, and contribute their health data to the open patient registry at PatientsLikeMe. Unlike other registries, PatientsLikeMe allows patients to query the data to compare their medical data to others with similar diseases, symptoms, or therapies so they can also compare their data across other diseases.

“The key to accelerating research for any patients, although particularly powerful for those with rare conditions, is to have efficient access to well characterized patient populations willing to be part of research,” adds Jamie Heywood, Co-founder and Chairman of PatientsLikeMe. “It’s terrifying to think you’re alone and manage your rare illness with a doctor who might not have ever seen another patient like you. We will change that.”

For more about the R.A.R.E Project, including current awareness campaigns, go to: http://rareproject.org.  For patients and nonprofits that want to join PatientsLikeMe, go to http://www.patientslikeme.com.

ABOUT R.A.R.E PROJECT

The R.A.R.E. Project exists to raise rare disease awareness, unify and empower a vibrant global rare disease community, and fund innovations to support ‘in-their-lifetime’ rare disease research.

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 www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

PatientsLikeMe member lscanlon


Medication Non-Adherence: The Costs and Complexities

Posted November 7th, 2011 by

On October 24-25th, PatientsLikeMe attended the 8th Annual Patient Adherence, Communication and Engagement (PACE) Conference in Philadelphia. The event focused on how the healthcare industry can deliver measurable improvements in patient adherence (i.e., taking medications as prescribed by your doctor).  Put simply, how can we help patients like you take the correct dosages at the correct times?

2011 Patient Engagement, Communication and Adherence (PACE) Conference

Why does this topic merit its own conference? Well, as we learned at PACE, medication non-adherence costs more than $300 billion every year in the US alone. You read that right. And this staggering amount is comprised of more than just hospitalization and emergency room costs. It also includes things like lost employee productivity and the cost for less optimal patient outcomes. Essentially, think of it as $300 billion the US could be saving each year – but currently is spending – in the midst of an economic downturn.

Here are some of the other noteworthy takeaways:

  • A key factor in non-adherence is that patients may frequently have an incorrect understanding or an unrealistic expectation from their doctor of what their medications will do for them.
  • Recently passed US legislation is attempting to change the way doctors are paid. The new law provides financial incentives for health plans to implement quality measures that hold doctors accountable for impacting patient outcomes.
  • Many new solutions, such as telemedicine and the patient-centered medical home, are being piloted and studied. The goal is to learn how technology can impact patient outcomes via medication adherence services and remote medical care.
  • To remain relevant to patients, biopharmaceutical companies now recognize that they must incorporate the voice and experience of the patient into their decision-making processes.

PatientsLikeMe Chief Marketing Officer and Head of Business Development David S. Williams III

Last but not least, our very own Chief Marketing Officer and Head of Business Development David S. Williams III spoke about the work PatientsLikeMe is doing around medication adherence. Specifically, he focused on patient-to-patient interaction as an influential driver of medication adherence and how we can give patients the tools they need to (1) understand how their medication is working for them and (2) hold each other accountable for following their doctors’ instructions.

Do you believe connecting with – and learning from – other patients is critical to adherence?  Share your thoughts in the comments section.

PatientsLikeMe member cfidyk