5 People With Rare Diseases Who Will Inspire You

Life with a rare disease can be a lonely experience.  Often, no more than 100 or 50 people in the entire world share the same disease.  There aren’t the same resources available to these people, or an awareness of the difficulties they face.

Which is why so many people with rare diseases inspire us: they overcome almost impossible obstacles to show us just how much can be accomplished despite limitations and a world that doesn’t understand them.

Below are five beautiful stories (among many) of some people with rare diseases who have inspired many with their bravery and vision.

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The Danger (And Potential) Of Diagnosing Ourselves Online

Practically since the internet was invented, people have been using it to try and figure out what ails them.  And today, the practice is so widespread that it is practically ubiquitous.  According to a recent Pew study, “80% of Internet users look for health information online, making medical inquiries the third most popular web-based pursuit, following only email and search engine use.”

In other words, whatever any experts say or do, the act of attempting to diagnose ourselves on the internet isn’t going anywhere.

But it would be a fair question to ask, though, if the internet is the right place to go.  Are we helping ourselves or hurting ourselves with our attempt to put the medical system back in our hands?

Let’s take a look at the facts.

Continue reading The Danger (And Potential) Of Diagnosing Ourselves Online

How To Empower Yourself In America’s Healthcare System

In this age of the information superhighway, the possibility of empowering patients and healthcare providers through enhanced communication is better than ever before. The use of electronic devices allows both patients and healthcare providers to learn more, organize information and communicate better.

Continue reading How To Empower Yourself In America’s Healthcare System

BrianLehrer.tv: CrowdMed

Brian Lehrer, award-winning host of The Brian Lehrer radio program, and BrianLehrer.tv, recently interviewed CrowdMed’s founder and CEO, Jared Heyman. The result is one of the most in-depth interviews you’ll find on CrowdMed, providing numerous insights on our mission, the wisdom of the crowd, and the inspiring story behind the development of CrowdMed. We hope you’ll enjoy the program as much as we did! Continue reading BrianLehrer.tv: CrowdMed

Infographic: The Plight Of The American Patient

Because we work with a community of patients who are having trouble with the way some of our healthcare is structured in the United States, we tend to run into many patients who have expressed a lot of frustration with America’s healthcare system.

After seeing so many examples, we decided to do some research: were the people who use CrowdMed exceptions to the rule?  Or was there something worse, something more prevalent, happening?

Continue reading Infographic: The Plight Of The American Patient

Are Doctors The Only Ones Qualified To Diagnose Us?

This may seem like a silly question.  How is it possible that anyone but experts can diagnose us?  We are an expert-driven culture, with a reliance on further and further specialization.  It’s generally assumed, for good reason, that one person who’s very knowledgeable is better than a group of people who aren’t as knowledgeable. Continue reading Are Doctors The Only Ones Qualified To Diagnose Us?

Proof The Internet Can Help Diagnose You

This is an exciting moment for us here at CrowdMed.  After just a year since launching, we have hit our 500th case submitted. What does that 500 signify?  That’s 500 people that have spent years, sometimes decades, trying to find out why they are sick.  500 people who have spent tens of thousands of dollars.  500 people who have spoken to specialist after specialist, doctor after doctor, with no answer. Continue reading Proof The Internet Can Help Diagnose You

When Crowds Are Smarter Than Doctors

“My son feels like an old man. He suffers from constant, debilitating fatigue, painful body aches… he feels like he’s dying.”

Those are the words of a desperate mother. Her son Joseph had always been an active and athletic child, but starting at the age of 12, his health began to deteriorate inexplicably. Over the next 5 years, Joseph and his mother consulted with 14 different doctors, endured dozens of tests, and racked up more than $75,000 in medical expenses – but still couldn’t find answers. Continue reading When Crowds Are Smarter Than Doctors

For 10 Years No One Believed She was Sick

We are humbled and honored to share the story of Deanna, one of our patients, who yesterday published an article on Examiner.com about her experience with our system.  As you will see, she had a fantastic experience.

Most importantly, she also shares her own journey to arriving at a diagnosis.  Like most of our users, she had spent years unsuccessfully vainly trying to get a proper diagnosis, and had almost given up hope when she heard about CrowdMed. Continue reading For 10 Years No One Believed She was Sick