18 posts from November, 2011

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!