Skip to main content

AfternoonNapper's Fibromuscular Dysplasia

Just before Thanksgiving, I had the opportunity to speak to the state's only brain aneurysm support group, which is sponsored by the Joe Niekro Foundation and Duke Raleigh Hospital. Natalie Niekro founded the Joe Niekro Foundation in 2007 in honor her father who lost his life from a sudden cerebral brain aneurysm on October 27, 2006. Many remember Joe as a major league knuckleballer who the Cubs (my team) drafted in 1966 and who achieve his greatest fame with the Houston Astros. The foundation is based in Scottsdale, AZ; however, there are foundation affiliates across the country.

Speaking to the aneurysm support group was important to me because I have four aneurysms of my own. It was just about this time in 2009 that three of the four aneurysms were treated via a process known as coiling. Not all aneurysms are eligible for coiling. I was lucky. I was out of the hospital about 36 hours after I had arrived. All I needed was a little Vicodin for my headache, and otherwise, I was told just to take it easy for the next two weeks. Who knew that brain surgery would be one of the easiest surgeries I've had yet? 

Exactly why I developed aneurysms is unknown. There is evidence that they are side effects of my overall diagnosis of fibromuscular dysplasia. It's also been said that I may have an undiagnosed and unidentified connective tissue disease overlap that would lead to aneurysms. Speaking to the Niekro Foundation's group allowed me to talk about my aneurysms in the context of FMD and subsequently how social media has played a part in having a disease like FMD.

Please take the time to watch—and then share!




Comments

Popular posts from this blog

Access Medicine X: Live Stream Brings Silicon Valley Direct To You

Stanford Medicine X is a catalyst for new ideas, designed to explore social media and information
technology’s power to advance medical practices, improve health, and empower patients to participate in their own care. But Medicine X also seeks to engage and empower those unable to attend in person to still get involved in the discussion.

Through Medicine X’s Global Access program, main stage content from the three-day conference will be made available through a high-quality live stream. Anyone with an Internet connection around the world will be able to view keynote speakers such as Daniel Siegel, MD, clinical professor of psychiatry at University of California-Los Angeles and author of The New York Times bestseller Brainstorm: The Power and Purpose of the Teenage Brain, and panel discussions such as Gonzalo Bacigalupe's focusing on the e-health movement and inequality among marginalized populations.

“Medicine X has distinguished itself through a singular commitment to inclusivit…

(My) Patient Leadership in Health Care

They say my grandmother used wait on the stoop of the family’s crackerbox house in Southside Chicago and watch as my father walked to school to see if he would get in a fight before he got to the end of the block. The eldest son of a Polish steel mill worker who dropped out of high school, my father was on the wrestling team and cleaned the inside of tanker trains. But he was smart. He liked science and math, went to college on a scholarship, majored in economics, and went on to Cornell Law School.

As a lawyer, he represented the incarcerated’s rights at the state department of corrections, practiced defense in the state supreme court, and became chief legal counsel at one of the state’s 16 public universities. He helped build houses with Habitat for Humanity, served midnight breakfast to college students during exam week, and tutored his daughter who did not inherit his aptitude for science and math. He taught constitutional law and never once found himself on the wrong side of the …

And In The Wilderness A Clearing Emerged

In addition to my work as an advocate, my actual "job" has been as a reporter and editor. I've been in the field professionally since I was 17 (though one could count running the school yearbook and starting a literary magazine as my initial forays). My first employment outside a horse stable was in an university's public relations office. I worked four summers there moving up from the mail room and putting together basic press releases to writing full articles and contracting for assignment work while at college. I earned a degree in journalism with an outside concentration in political science at UNC-Chapel Hill. While there I worked as a writer, desk editor and managing editor of The Daily Tar Heel; wrote for and edited a literary magazine; volunteered for Journalists United to Maximize Potential, a student-run organization that taught middle school students how to produce a newspaper; interned in public relations for the Morehead Planetarium; and interned in publ…