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 cancer—one 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? 

Being Mindful With the Munchies, and Learning to Say No to Sugar

It has been one week and one day since I began the concerted effort to be better to my body. Using MyFitnessPal, I am tracking my food intake—an exercise that has been a true wake up call. By tracking what I'm eating, I have discovered how much I was over-eating. If one is not careful, it takes no time at all to rack up 2,000 calories in a day much less 1,500 or less, which is my target. I'm measuring now, paying attention to serving size. Instead of bringing the box of Reduced Fat Wheat Thins to the table as I write this, I counted out 16 of them—a serving totaling 130 calories—and snacked. Normally, I probably would have mindlessly munched hand to mouth until half the box was gone. Half the box would be 585 calories. .. as a snack. No. I get a serving.

My usual diet has never been too bad in terms of what I ate. I love fruits and vegetables, rarely drink sodas, and go easy on the meat. I'm not overly keen on fast food, though I'll absolutely admit to loving pizza and falling prey to a few chicken sandwich combos, which can be worse than a traditional burger. But most of all... most of all... I love carbs and sugars. Bread, crackers, chips, pasta, cookies, cakes, pie, candy—I want it all. What I've discovered is that carbs and sugars are like a drug for me, and having them only makes me want more of them. This realization came just as the San Francisco Chronicle featured an article about researchers argument that sugar "should be highly regulated with taxes, laws on where and to whom it can be advertised, and even age-restricted sales." While such an approach may seem extreme, I do agree that more must be done with nutrition labels to increase public awareness of sugar intake. Overall, nutrition labels are too small, too innocuous, and purposefully deceitful. Candy bars and cookies are a wonderful example. Nutrition labels are tucked under packaging flaps, and while calories are listed, they are listed per serving and only upon closer inspection does one realize that a serving is one cookie or half a candy bar. Who eats only one cookie or half a candy bar?

A problem with sugar in particular is that it's sneaky. The 170 calorie breakfast shakes I bought kick in a whopping 17 grams of sugar of the 24 grams that MyFitnessPal has set as my intake limit. The clementines that I love so much and eat two of at a time contribute 13 grams of sugar (at least it's natural) with 80 calories. The fruit and cereal snack bars I bought each have 9 grams of sugar, though only 90 calories. The oatmeal cereal itself has 9 grams and 250 calories with skim milk, but the Raisin Bran, the sneaky sneaky Raisin Bran, has 17 grams of sugar along with its 230 calories with skim milk. Consequently, I have been vastly exceeding my daily limit. The good thing is that by tracking what I'm eating, I'm learning what I'm doing right and where I need to work on improving.