Raising Awareness. An Essay by Stephanie

spia_lettersThe following essay was submitted by Stephanie as part of the Share Your Story project.

To view other projects submitted by Stephanie, click here.

I don’t have lupus, and have never met anyone face-to-face “IRL” who does. But since learning about the disease, I’ve begun to take awareness of it very personally. I don’t know why, precisely; I assume it’s because I’ve heard it described a lot as an “invisible” disease, and I know how frustrating other invisible diseases can be. Regardless of the reason, starting with Jules’ Lupus Awareness Day virtual gallery back in May, I’ve wanted to help literally any way I could.

Back in May, I decided to participate by making origami butterflies for the 1000 Paper Butterflies project. I used my free time at work to fold quite a few of these; a handful of residents were at first curious, then after I explained what I was doing they also helped me make the butterflies. This month, though, I was concerned about what I could do to contribute to the gallery, as my artistic skills more-or-less end with butterfly folding, and without personal experience with lupus I don’t have any direct stories I could share.

After thinking about it for much of August & September, I did some research into nonprofits and other groups that supported lupus research and education. Since I didn’t want to just make the same butterflies again, I took a slightly different approach to the October contribution for the gallery:


While I didn’t receive any butterflies to send in with this letter, I did receive donations—a total of $87.40 donated to the Lupus Foundation of America in less than two weeks. Both residents who did and those who weren’t able to donate at the time took copies of lupus fact sheets I’d prepared, and quite a few of them seemed to know someone directly or indirectly who had lupus, even if they didn’t understand what lupus was. I know it’s a lot to hope for, but so long as just one of those people came to better understand how those they knew are affected by the disease, then I’d feel like I made a difference myself.

As for the total donation, it was made to the LFA on October 20th in Jules’ name, but it really goes in honor of everyone who lives with lupus. I’d hoped the letter from the organization would reach Jules in time for the submission deadline today, but I don’t think it’s going to. Nonetheless—the staff & residents at my property are thinking of you specifically, Jules, as well as of those they’ve known themselves who are fighting against lupus. Our submission for your gallery doesn’t qualify as “art” but we’ve done what we can to spread awareness and to educate those around us—perhaps those people, in turn, will find a way to educate those around them.


2 Responses to Raising Awareness. An Essay by Stephanie

  1. It’s people like Stephanie that make a big difference for us Lupies! Stephanie, thank you so much for your time and hard efforts. You will “karmically” be rewarded for your caring and selfless act of compassion. Remember, Stephanie, most very successful non-profits, started just like you are starting! Congrats! Job well done!

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