Skip to main content

19 Days of Living with FMD - Day 2 - A Rare Disease in Focus

Eighteen days - that's how long FMD Chat, a fledgling nonprofit organization dedicated to those affected by the rare disease fibromuscular dysplasia, has left to raise $1,274 more dollars in order to reach its MedStartr goal of $5,000. Why do I care? Because I have fibromuscular dysplasia and FMD Chat is my organization. FMD Chat relies on social media to connect patients around the world with the peer-to-peer support that makes living with a rare disease less of an isolating experience.

What is MedStartr? MedStartr is a crowdfunding platform specifically designed for healthcare. It's like Kickstarter, but not. It has given FMD Chat access to a group of potential donors who would never otherwise know about or have interest in contributing to a small group of rare disease patients. However, many donors still remain "potential" donors and the small group of rare disease patients still need donors' support. If FMD Chat does not meet its $5,000 funding goal by Sept. 7, then the project fails and all the money raised goes back to the donors.

In order to help raise awareness of FMD Chat and its goal, I have taken up the tactics of public radio's listener support fund drives—nineteen days to meet our goal, nineteen posts to show you what it's been like, and what it continues to be like, to be me, a patient with FMD. Today, marks day two.

WARNING: it's going to get graphic. 

DON'T WANT TO SEE IT
: help FMD Chat reach its goal before I get to the emergency surgery pics. 
Day 2
This is my neurologist's office.
I have been his patient since April 2008. 
At age 28, and after three days of an intense earache,
I suddenly was overcome by dizziness.
An ambulance was called.
I don't remember much of the next 24 hours.
Despite pronounced Horner's Syndrome,
the hospital doctors said that I had vertigo
and that it would go away as quickly as it had come on.
They were wrong. 
It was at home that I discovered I had 
lost my senses of pain and temperature on my right side.
Concluding that this was abnormal,
I made an appointment with my family practice doctor.
He too concluded that something was wrong
and referred me to the neurologist.
My neurologist, diagnosed an ischemic stroke.
More than four years later,
I still have deficits.
More than four years later,
I see my neurologist at least twice a year.


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…

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…

Crowdfunding Creativity

For as involved as I am in the national (and, at times, international) healthcare social media community, I find myself in a local void. The mountains I call home are not the epicenter of anything to do with healthcare or social media much less the two together. I've been chipping away, trying to carve out a foothold such that the wealth of education and opportunity found in healthcare and social media can enrich the lives of those I routinely connect with in real life as it has my own. It's slow going. Every fear, every socio-economic force that pushes back against the #hcsm tide can be found here. But today... today made a new friend.

As like minds are prone to do, @SociallyMD and I connected first via Twitter. Lo and behold — we live a mere 20 minutes apart. Prior to departing for Stanford's Medicine X conference, I suggested that since we were the only two Tweeps occupying the local #hcsm space, @SociallyMD and I should meet. And meet we did, instantly connecting profe…