Skip to main content

I Am More Than My Disease: A Project of Identity for World Rare Disease Day

On Feb. 29 patients affected by rare disease will celebrate the 5th Annual World Rare Disease Day. There are more than 7,000 rare diseases in the world today. More than 30 million Americans alone are affected. However, unlike cancer or diabetes or Alzheimer's, rare diseases are not in the general public's frame of reference. World Rare Disease Day aims not just to spread awareness of any one disease, but of all rare diseases and the advocacy that is needed in order for patients to get the care they need and deserve.

Patients with rare diseases often are highly engaged in their own healthcare. They ask questions; they push for answers; they reach out to one another. While having a rare disease and pushing for quality care can be all consuming, patients with rare diseases are first and foremost people—daughters, husbands, artists, sports fans, foodies, writers, runners, leaders, friends... 

In support of World Rare Disease Day and the people who are the patients, The Afternoon Nap Society will become host to an online gallery titled "I Am More Than My Disease: A Project of Identity." Participants are invited to create their own word cloud images that include the name of their disease and words used to describe themselves. Images submitted to The Afternoon Nap Society will be featured on the site in the week leading up to World Rare Disease Day. 

Want to participate? Here's how:

1) EXPLORE: Visit wordle.net or simply click on "Create your Own." 

2) DESCRIBE: In the large text box, fill in the name of your disease (such as Marfan syndrome, Huntington's disease, or prostate cancerone need not be a patient with a rare disease in order to participate). Continue filling in the box with words that describe you as a person or things that you like. Examples include: mom, swimmer, cook, gardener, cats or music. Wordle will treat each word as an individual word, so remember that phrases such as "I love chocolate cake" will be broken up. You may simply wish to include the words chocolate or cake. 

3) CONTINUE: Once you have filled in your disease and descriptive words, click the small button that says "Go."

4) ADJUST: On the next screen you will see your Wordle creation and will be allowed to adjust the Wordle's font, layout, colors, and more. 

5) SAVE: Once you are happy with your Wordle, click "Save to public gallery" on the bottom right side of the Wordle. You will be given an option to input a title, username, and comment. Title your Wordle "I Am More Than My Disease." Fill in a username of your choosing so that your Wordle is attributed to you. Your username need not be your actual name or any other personal identifier unless you want it to be—just make it something so that at least you know which Wordle is yours! Click "OK" when done.

6) SEND: The last screen will feature your Wordle and provide a html code in a blue box below it. Copy the code and paste it into an email to Afternoon Napper. Title your email "I Am More Than My Disease" and hit send. Wordles must be submitted by Feb. 20. 

7) ENJOY: Return to The Afternoon Nap Society during the week of Feb. 22-29 to see your Wordle and others that were created. 


What will your Wordle say? 
Wordle: Untitled

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…