04 February 2012

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

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"We are what we think. All that we are arises with our thoughts. With our thoughts, we make the world." — Buddha

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