Brown Grad Gains Inspiration Through Social Media

Saturday, November 06, 2010

Marques Coleman, GoLocalProv Contributor

On May 18, 2010, John Stamler, Brown graduate of ’98, underwent robotic open heart surgery at the Cleveland Clinic in Ohio. Little did he know that less than six months later, he would achieve his goal of running in the New York City Marathon. Stamler, however, is not only running for himself, but an amazing cause. He is running to raise money and awareness for BensFriends.org, an international network of patient communities that connects people who have rare diseases and conditions.

At six years old, Stamler was diagnosed with severe type 1 von Willebrand’s Disease (vWD). While affecting an estimated 1 percent of the global population, vWD is the most common hereditary blood disorder. There is no cure, but luckily in Stamler’s case it was manageable. Manageable in a way that required six major operations in a seven-year period.

A second, rare, diagnosis

In December 2009, Stamler was also diagnosed with Atrial Septal Defect (ASD) during a pre-screening for one of his operations. Another congenital condition, ASD is where there is a hole between the left and right atrium in the heart. For the next few months, Stamler went to a number of major hospitals and spoke with even more experienced doctors. It seemed as if no one could provide a promising route to safely close his ASD.

“I realized why many doctors didn’t know what to do for my case," Stamler said. "After aggressively researching my conditions, I figured out why the combination was so rare. About 1% of the population has my blood disorder (vWD) and only 4 out of 100,000 newborns annually have my heart condition (ASD), which means 0.00004% of the US population has both conditions. So about 120 people.”

Stamler eventually found a very experienced surgeon and underwent the four hour robotic open-heart surgery. Basically the heart is stopped, the patient is put on the heart and lung machine and the surgeon uses a specially designed computer to power surgical instruments on thin robotic arms to perform the surgery.

Social media provides opportunity, comfort

After surgery, Stamler stumbled onto BensFriends.org and started two online communities related to his conditions. He now shares his experience with fellow members on the site. Currently with 22 communities and over 6,000 plus members, BensFriends.org continues to grow rapidly, but there are still thousands of rare diseases and millions of people around the world that need support. BenFriends.org is on a mission to guarantee that everyone with a rare disease has a safe place to go everyday and connect with people like them.

“I am beyond grateful for everything my incredible surgeons, medical professionals and physical therapist have done for me over the years. I would also like to make a special thanks to my amazing heart surgeon, to the incredible doctors and staff at the Cleveland Clinic, to my family and friends for all of their support and to my internist for spotting the ASD during my pre screening for sinus surgery. Originally I wanted to eclipse my 2008 London time of 3 hours and 37 minutes but given where I was less than six months ago, I am just focused on having a great day out, soaking up the NY City experience and raising awareness for Ben’s Friends.”

Stamler will be running in the New York City Marathon on November 7. His mission is to raise money and awareness for what inspires him, BensFriends.org and all of its members. You can donate to Stamler’s cause here.

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Brown Grad Gains Inspiration Through Social Media

A second, rare, diagnosis

Social media provides opportunity, comfort

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